Objective Develop a tailored family-centered approach to genetic counseling following abnormal newborn screening (NBS) for cystic fibrosis (CF). Method A genetic counseling consortium reviewed research literature, selected theoretical frameworks, and incorporated counseling psychology micro skills. Results This innovative intervention integrated theories and empirically validated techniques. Pilot testing and parent feedback confirmed satisfaction with and feasibility of the approach designed to (a) minimize parents’ distress, (b) facilitate parents’ understanding, (c) increase parents’ capacities to use genetic information, and (d) enhance parents’ experiences with genetic counseling. Counselors engage in a highly interactive process of evaluating parents’ needs and tailoring assessments and interventions that include a therapeutic environment, the family’s emotional needs, parents’ informational needs, and a follow-up plan. Conclusion This promising new model is the first to establish a theory-driven, evidence-based standard for genetic counseling in the context of NBS for CF. Additional research will evaluate the model’s efficacy in clinical practice.
Background Newborn screening (NBS) for cystic fibrosis (CF) has become standard practice in many countries. Consequently, the prevalence of infants with intermediate/equivalent sweat test results has increased. This study examined clinical practices in the United States (US) related to intermediate sweat test results subsequent to NBS. Methods Telephone surveys were conducted with staff from 77 (47% response rate) US CF centers documenting clinical practices related to intermediate/equivalent sweat chloride levels (30–59 mmol/L) following abnormal NBS. Results Thirty percent of centers followed CF Foundation guidelines for classifying intermediate/equivalent results. There was much variability in sweat testing procedures, diagnostic labels, additional diagnostics, addressing prognosis, and services offered to parents. CF center staff identified a need for resources to better address the uncertainty associated with intermediate/equivalent results. Conclusion Findings warrant evaluation of barriers to adherence with existing guidelines and establishment of internationally accepted, evidenced-based, clinical standards for infants with intermediate/equivalent CF NBS results.
People consistently act in ways that harm the environment, even when believing their actions are environmentally friendly. A case in point is a biased judgment termed the negative footprint illusion, which arises when people believe that the addition of “eco-friendly” items (e.g., environmentally certified houses) to conventional items (e.g., standard houses), reduces the total carbon footprint of the whole item-set, whereas the carbon footprint is, in fact, increased because eco-friendly items still contribute to the overall carbon footprint. Previous research suggests this illusion is the manifestation of an “averaging-bias.” We present two studies that explore whether people’s susceptibility to the negative footprint illusion is associated with individual differences in: (i) environment-specific reasoning dispositions measured in terms of compensatory green beliefs and environmental concerns; or (ii) general analytic reasoning dispositions measured in terms of actively open-minded thinking, avoidance of impulsivity and reflective reasoning (indexed using the Cognitive Reflection Test; CRT). A negative footprint illusion was demonstrated when participants rated the carbon footprint of conventional buildings combined with eco-friendly buildings (Study 1 and 2) and conventional cars combined with eco-friendly cars (Study 2). However, the illusion was not identified in participants’ ratings of the carbon footprint of apples (Study 1 and 2). In Studies 1 and 2, environment-specific dispositions were found to be unrelated to the negative footprint illusion. Regarding reflective thinking dispositions, reduced susceptibility to the negative footprint illusion was only associated with actively open-minded thinking measured on a 7-item scale (Study 1) and 17-item scale (Study 2). Our findings provide partial support for the existence of a negative footprint illusion and reveal a role of individual variation in reflective reasoning dispositions in accounting for a limited element of differential susceptibility to this illusion.
Providing patient care for the unconscious population in the intensive care unit can be very challenging. Over time, some nurses may face barriers that prevent them from providing caring behaviors, such as communication. Review of the literature found the attitude of a nurse, hospital technology, and the working environment are barriers that prevent therapeutic nurse-patient communication with a patient who is unconscious or sedated and ventilated. Becoming more knowledgeable about how communication can help and what can be done if such barriers present themselves in the hospital setting is beneficial to improving nurses' care in the intensive care unit.
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