Further evaluation of the role of protective equipment in the functional analysis of self-injurious behavior

Using a procedure similar to the one described by Le and Smith (in press), we evaluated the effects of protective equipment during a functional analysis for 2 individuals who engaged in severe self-injurious behavior (SIB). Results of our analyses revealed that the use of protective equipment during functional analyses of SIB suppressed levels of responding such that a behavioral function could not be identified.     

Teaching teenagers with autism to seek assistance when lost

Three teenagers with autism were taught to respond to a vibrating pager to seek assistance in community settings when physically separated from their parents or teachers. A multiple baseline probe design across participants demonstrated that, upon being paged, participants successfully handed a communication card to a community member indicating that they were lost. Generalization was assessed in nontraining community sites and on outings with the participants' parents.     

Making the Invisible Visible: Identifying and Articulating Culture in Practice‐Based Evidence

This study describes a conceptual tool, labeled the “culture cube,” developed to identify and articulate the cultural underpinnings of prevention and early intervention projects in five priority populations (i.e., African American, Asian Pacific Islander, Latino, Native American, and Lesbian, Gay, Bisexual, Transgender, Queer, and Questioning), participating in the California Reducing Disparities Project Phase 2 (CRDP Phase 2). The culture cube was developed for evaluation of these practice‐based evidence services (PBEs) for three purposes: (a) to focus attention on revealing and articulating more fully the operative worldview and culturally grounded frameworks underlying PBEs, explicitly identifying the links between cultural beliefs and values, community needs, and intervention design; (b) to guide the methods used to assess and evaluate PBEs so that the outcome indicators and process measures are conceptually consistent, community defined, and culturally centered; and (c) to invite communities to use their own indigenous epistemological frameworks to establish credible evidence. After reviewing the literature in this area and describing the theoretical framework for the culture cube, we describe its development, application, and the response to its use in the initial stages of the California Reducing Disparities Project‐Phase 2.     

Genetic Counseling Milestones: A Framework for Student Competency Evaluation

Graduate medical education has recently increased focus on the development of medical specialty competency milestones to provide a targeted tool for medical resident evaluation. Milestones provide developmental assessment of the attainment of competencies over the course of an educational program. An educational framework is described to explore the development of Genetic Counseling Milestones for the evaluation of the development of genetic counseling competencies by genetic counseling students. The development of Genetic Counseling Milestones may provide a valuable tool to assess genetic counseling students across all program activities. Historical educational context, current practices, and potential benefits and challenges in the development of Genetic Counseling Milestones are discussed.     

Measuring the Effectiveness of a Genetic Counseling Supervision Training Conference

Genetic counselors who receive formal training report increased confidence and competence in their supervisory roles. The effectiveness of specific formal supervision training has not been assessed previously. A day-long GC supervision conference was designed based on published supervision competencies and was attended by 37 genetic counselors. Linear Mixed Model and post-hoc paired t-test was used to compare Psychotherapy Supervisor Development Scale (PSDS) scores among/between individuals pre and post conference. Generalized Estimating Equation (GEE) model and post-hoc McNemar’s test was used to determine if the conference had an effect on GC supervision competencies. PSDS scores were significantly increased 1 week (p < 0.001) and 6 months (p < 0.001) following the conference. For three supervision competencies, attendees were more likely to agree they were able to perform them after the conference than before. These effects remained significant 6 months later. For the three remaining competencies, the majority of supervisors agreed they could perform these before the conference; therefore, no change was found. This exploratory study showed this conference increased the perceived confidence and competence of the supervisors who attended and increased their self-reported ability to perform certain supervision competencies. While still preliminary, this supports the idea that a one day conference on supervision has the potential to impact supervisor development.     

Duchenne Muscular Dystrophy: a Survey of Perspectives on Carrier Testing and Communication Within the Family

Carrier testing is widely available for multiple genetic conditions, and several professional organizations have created practice guidelines regarding appropriate clinical application and the testing of minors. Previous research has focused on carrier screening, predictive testing, and testing for X-linked conditions. However, family perspectives on carrier testing for X-linked lethal diseases have yet to be described. In this study, we explored communication within the family about carrier testing and the perspectives of mothers of sons with an X-linked lethal disease, Duchenne muscular dystrophy (DMD). Twenty-five mothers of sons with DMD participated in an anonymous online survey. Survey questions included multiple choice, Likert scale, and open ended, short answer questions. Analysis of the multiple choice and Likert scale questions revealed that most mothers preferred a gradual style of communication with their daughters regarding risk status. In addition, most participants reported having consulted with a genetic counselor and found it helpful. Comparisons between groups, analyzed using Fisher’s exact tests, found no differences in preferred style due to mother’s carrier status or having a daughter. Thematic analysis was conducted on responses to open ended questions. Themes identified included the impact of family implications, age and maturity, and a desire for autonomy regarding the decision to discuss and undergo carrier testing with at-risk daughters, particularly timing of these discussions. Implications for genetic counseling practice are discussed.     

The Relationship between the Supervision Role and Compassion Fatigue and Burnout in Genetic Counseling

Many genetic counselors provide supervision to students during their career. Previous studies have shown genetic counselors, in general, are at increased risk for developing compassion fatigue. The purpose of this study was to determine if there was a difference in compassion fatigue and burnout levels in genetic counselors who currently supervise compared to genetic counselors who do not. Genetic counselors who currently practice in a clinical setting (N = 391) completed an online survey containing demographic questions, the Professional Quality of Life Scale, the State-Trait Anxiety Inventory, and questions specific to the genetic counselor’s experiences with supervision. Overall, when controlling for trait-anxiety, the supervision role by itself was not independently associated with the risk for compassion fatigue and burnout among genetic counselors. Within supervisors, however, there were several factors which were associated with this risk. Those with less supervision experience reported more secondary traumatic stress. Those supervisors reporting less confidence had decreased compassion satisfaction. Those with less experience or less confidence in their supervision role were most likely to be at increased risk for developing compassion fatigue. Training in supervision and support for dealing with compassion fatigue and burnout may be beneficial to supervisors with less experience.