Developing Standard Recommendations (Guidelines) for Genetic Counseling Practice: A Process of the National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) supports the development of practice recommendations (guidelines) in the field of genetic counseling. This paper reviews the basic components of NSGC genetic counseling practice recommendations as well as the process for formal adoption of such documents, as approved by the Board of Directors of the NSGC.     

Presurgical Coping, Depression, and Quality of Life in Persons with Parkinson's Disease

This study describes utilization of coping strategies and evaluates the interaction between coping strategies, depression, and quality of life (QOL) in patients with Parkinson's disease (PD) who are being considered for neurosurgical intervention. Eighty patients (mean age 61.7 years) with PD being evaluated for possible deep brain stimulation completed self-report instruments of coping strategies (Coping Responses Inventory), depression (Beck Depression Inventory), and disease-specific QOL (Parkinson's Disease Questionnaire-39). Analyses showed that patients with PD cope with the acute stressor of approaching neurosurgery through a variety of strategies, but particularly avoidant and behavioral strategies. When the correlated but apparently opposing effects of cognitive and behavioral strategies were teased apart, greater use of cognitive strategies was associated with more severe depressive symptomatology (and poorer QOL), while greater use of behavioral strategies appeared to be associated with less depression. Depressive symptomatology, in turn, was associated with poorer QOL. However, coping had minimal direct association with QOL. From this it was concluded that patients with advanced PD generate a variety of coping responses to an acute stressor such as surgery, and the use of behavioral strategies, in particular seeking of alternative enjoyable activities, may be associated with better mood if salutary effects are not overwhelmed by less helpful cognitive coping techniques. The minimization of depressive symptomatology, in turn, is associated with better QOL.     

Factors Associated with Delays of Days to Decades to Criminal Prosecutions of Child Sexual Abuse

Until the latter part of the 20th century, legal doctrines made it almost impossible to successfully prosecute in criminal court a case involving child sexual abuse (CSA), whether the complaint was timely or delayed. Many English-speaking countries have abrogated most formal legal barriers to prosecuting CSA cases, and courts are faced with the singular challenge of adjudicating sexual offenses against children that are reported to have happened years or decades earlier. We conducted analyses of 4,237 criminal complaints of CSA heard in Canadian criminal courts. There were several differences between timely and delayed prosecutions that led us to conclude that delayed prosecutions of CSA are common and due, in part, to the nature of the offense. Offense duration was associated with longer delays to prosecution. When the accused had access to the child through his position in the community, length of delay to prosecution was very long, particularly for male complainants. More research is needed on delayed CSA prosecutions, particularly given an apparent trend for jurisdictions to abolish barriers to criminal prosecutions of CSA that occurred years or decades earlier. Copyright © 2015 John Wiley & Sons, Ltd.     

Young Children Choose to Inform Previously Knowledgeable Others

Children recognize that people who know more are better informants than those who know less. How does an individual’s prior knowledge affect children’s decisions about whom to inform? In 3 experiments, 3- to 6-year-old children were invited to share a novel piece of information with 1 of 2 potential recipients who differed in their recent history of knowledge. Children tended to inform the previously knowledgeable person rather than the previously ignorant person. This same effect was observed in a 4th experiment when the knowledgeable person stated that she already knew the information the participant had to share. In no case was the opposite pattern observed: Children never chose to inform the person who had known less. These results seem to conflict with equity considerations and may reflect a preference to affiliate with competent social partners.     

Psychological adjustment to cleft lip and/or palate: A narrative review of the literature

Objective: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of the literature is needed in light of the rapidly expanding and changing field.

Design: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015.

Main outcome measures: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined.

Results: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges.

Conclusions: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.