Neurofibromatosis Type 1 in Genetic Counseling Practice: Recommendations of the National Society of Genetic Counselors

The objective of this document is to provide recommendations for the genetic counseling of patients and families undergoing evaluation for neurofibromatosis type 1 (NF1) or who have received a diagnosis of NF1. These recommendations are the opinions of a multi-center working group of genetic counselors with expertise in the care of individuals with NF1. These recommendations are based on the committee’s clinical experiences, a review of pertinent English language medical articles, and reports of expert committees. These recommendations are not intended to dictate an exclusive course of management, nor does the use of such recommendations guarantee a particular outcome. These recommendations do not displace a health care provider’s professional judgment based on the clinical circumstances of an individual patient. Both Heather B. Radtke and Courtney D. Sebold contributed equally to this document.     

Postpartum mood disorders: Results of an online survey

Purpose: Postpartum mood disorders (PMDs), the distressing mental and emotional symptoms experienced by women after childbirth, are just now receiving the attention they warrant. Given the serious and sometimes life‐threatening nature of PMDs, we used a qualitative research design to examine more closely the nature of symptoms experienced and the effective strategies women used to cope with PMD. Participants: The respondents were 252 members of PMD and breast‐feeding (La Leche League) support groups throughout the United States. Method: Participants responded anonymously to open‐ended questions in an online survey. The data were reviewed by the research team to determine common themes and prevailing issues. Results: Participants reported myriad different symptoms and used a host of various strategies to alleviate problematic thoughts, feelings, and behaviours following childbirth. Postpartum symptoms affected participants’ plans to have future children. For some women, symptoms became more intense during subsequent births. Despite the problematic nature of PMD, more than half of the participants reported receiving little or no information from healthcare providers about PMDs. Implications for counsellors and other healthcare providers are discussed in detail.     

Subjective Well-Being in Pediatric Oncology Patients

Using negative and positive measures of subjective well-being (SWB), we compared reports of 29 youth with cancer to a matched control sample of 29 youth. Youth with cancer did not differ from healthy controls on self-report measures of life satisfaction, hope, positive affect, or negative affect. Scores on measures of hope were positively correlated with time since diagnosis; none of the other SWB variables was significantly related to time since diagnosis. Except for negative affect, moderate correlations were found between parents’ reports of their own SWB and their youths’ self-reported SWB. Parents’ estimates of their youths’ SWB were also moderately associated with youth self-reports, except for negative affect. Parents of youth with cancer and their youth may use different criteria for reporting the nature and frequency of negative affect, but use similar criteria for reporting positive affect and other positive measures (hope, life satisfaction). Implications for more comprehensive assessments of the well-being of pediatric oncology patients are discussed.     

Loss of control over eating in obese youngsters

OBJECTIVE: To investigate loss of control over eating in a sample of obese youngsters seeking treatment. METHOD: Obese youngsters (aged 10-16) were categorized into those having experienced loss of control (LC) and those who had not (NoLC) using the child version of the Eating Disorder Examination. Furthermore, the LC group was subdivided into an objective binge eating (OBE) and a subjective binge eating (SBE) group. The groups were compared on psychological measures. RESULTS: LC subjects (17.9%) showed more concern about eating, weight and shape. They also reported more emotional and external eating behaviors and more depression. Youngsters who report SBE show resemblances to both NoLC and OBE subjects. DISCUSSION: LC subjects are characterized by more eating-related psychopathology and higher levels of depression. Especially obese youngsters with OBE turned out to be a pathological group.     

Explaining errors in children's questions

The ability to explain the occurrence of errors in children's speech is an essential component of successful theories of language acquisition. The present study tested some generativist and constructivist predictions about error on the questions produced by ten English-learning children between 2 and 5 years of age. The analyses demonstrated that, as predicted by some generativist theories [e.g. Santelmann, L., Berk, S., Austin, J., Somashekar, S. & Lust. B. (2002). Continuity and development in the acquisition of inversion in yes/no questions: dissociating movement and inflection, Journal of Child Language, 29, 813-842], questions with auxiliary DO attracted higher error rates than those with modal auxiliaries. However, in wh-questions, questions with modals and DO attracted equally high error rates, and these findings could not be explained in terms of problems forming questions with why or negated auxiliaries. It was concluded that the data might be better explained in terms of a constructivist account that suggests that entrenched item-based constructions may be protected from error in children's speech, and that errors occur when children resort to other operations to produce questions [e.g. Dabrowska, E. (2000). From formula to schema: the acquisition of English questions. Cognitive Liguistics, 11, 83-102; Rowland, C. F. & Pine, J. M. (2000). Subject-auxiliary inversion errors and wh-question acquisition: What children do know? Journal of Child Language, 27, 157-181; Tomasello, M. (2003). Constructing a language: A usage-based theory of language acquisition. Cambridge, MA: Harvard University Press]. However, further work on constructivist theory development is required to allow researchers to make predictions about the nature of these operations.     

Assessment of family functioning in Caucasian and Hispanic Americans: reliability, validity, and factor structure of the Family Assessment Device

The purpose of this study was to examine the factor structure, reliability, and validity of the Family Assessment Device (FAD) among a national sample of Caucasian and Hispanic American families receiving public sector mental health services. A confirmatory factor analysis conducted to test model fit yielded equivocal findings. With few exceptions, indices of model fit, reliability, and validity were poorer for Hispanic Americans compared with Caucasian Americans. Contrary to our expectation, an exploratory factor analysis did not result in a better fitting model of family functioning. Without stronger evidence supporting a reformulation of the FAD, we recommend against such a course of action. Findings highlight the need for additional research on the role of culture in measurement of family functioning.     

Responses of dairy heifers to the visual cliff formed by a herringbone milking pit: evidence of fear of heights in cows (Bos taurus)

The ability of cows (Bos taurus) to perceive depth has never been experimentally investigated. If cows can perceive depth, the milking pit in commercial milking facilities may be fear provoking for dairy cows, as past research has shown that most land-dwelling species possess an instinctive fear of heights. In the current study, 12 dairy heifers (1-year-old cows) were exposed to a milking pit (depth-exposed group) and 13 heifers (control group) were exposed to a standard change in the environment while they moved through a milking facility over a 5-day treatment period. Heifers in the depth-exposed group showed a higher heart rate (p < .05) and stopped more often (p < .05) than did those in the control group; persistence of heart rate but not of behavioral responses on repeated exposures indicated that some habituation to the depth stimulus had occurred. Depth exposure had no effect on cortisol concentrations or on ease of handling. These results indicate that heifers responded differently to a change in depth than they did to a standard change in the environment and provide evidence of both depth perception and acute fear of heights in cows.     

ANGRY AND AFRAID: WOMEN'S APPRAISAL OF SEXUAL HARASSMENT DURING LITIGATION

The purpose of this study was to examine primary appraisal of sexual harassment, that is, a victim's cognitive evaluation of the harassment and the factors that influence this appraisal. The perspectives of 72 female plaintiffs were investigated by measuring their primary appraisal of the event, examining the structure of this appraisal, and assessing the influence of stimulus and individual factors on appraisal. Cluster analysis revealed four distinct emotion clusters: demoralization, anxious arousal, fear, and self-blame. Significant correlations suggest that these four appraisal clusters are differentially related to certain stimulus (e.g., intensity) and individual (e.g., self-esteem, previous victimization, feminist attitudes, and attributions) factors. Theoretical and practical implications for the role of primary appraisal are discussed.     

Closeness to God Among Those Doing God’s Work: A Spiritual Well-Being Measure for Clergy

Measuring spiritual well-being among clergy is particularly important given the high relevance of God to their lives, and yet its measurement is prone to problems such as ceiling effects and conflating religious behaviors with spiritual well-being. To create a measure of closeness to God for Christian clergy, we tested survey items at two time points with 1,513 United Methodist Church clergy. The confirmatory factor analysis indicated support for two, six-item factors: Presence and Power of God in Daily Life, and Presence and Power of God in Ministry. The data supported the predictive and concurrent validity of the two factors and evidenced high reliabilities without ceiling effects. This Clergy Spiritual Well-being Scale may be useful to elucidate the relationship among dimensions of health and well-being in clergy populations.     

Attachment‐related expectations and mother‐referent memory bias in middle childhood

Understanding the cognitive processing of attachment‐relevant information has become a major focus of attachment research. Previous research demonstrated links between attachment and memory for attachment‐related information, but results were contradictory and did not control for mood‐effects. The current study aimed to provide a conceptual framework to capture inconsistencies. A straightforward memory bias hypothesis was derived and tested. Fifty children (aged 10–12) completed questionnaires assessing confidence in maternal support and depressive symptoms, and a memory task in which they recalled positive and negative words that referred to previous interactions with mother. Less confidence in maternal support and more depressive symptoms were linked to a more negative mother‐related memory bias. The effect of confidence in maternal support remained marginally significant when controlling for depressive symptoms, explaining the initial effect of depressive symptoms. These findings support attachment theory's hypothesis that attachment‐relevant information is processed in an attachment expectation‐congruent way.