Measuring high-risk parents' opinions about direct-to-consumer genetic testing for adult-onset inherited cancer syndromes in their adolescent and young adult children.

Neither direct-to-consumer (DTC) genetic testing nor predictive genetic testing for adult-onset conditions is recommended for minor children due to ethical concerns and low clinical utility. However, parents with pathogenic variants (PVs) in disease-causing genes may be interested in pursuing genetic testing that includes the familial PV for their children. The Pediatric Testing Attitudes Scale (P-TAS) was previously developed to examine high-risk parents' opinions about pediatric BRCA genetic testing for adult-onset breast/ovarian cancer. Here, the psychometric properties of the P-TAS were examined in a new sample of N = 126 parents (M age = 47.2 years) with PVs in a more complete set of cancer risk genes represented on DTC panel tests. The mean score on the P-TAS was 44 out of a maximum score of 60, indicating that a majority of parents generally held favorable opinions about testing their children for adult-onset inherited cancer syndromes. The internal consistency of the full scale was high (α = 0.91). A factor analysis identified two-component scales, labeled Attitudes and Beliefs (α = 0.93) and Decision Making and Communication (α = 0.83). In a multivariable regression model, P-TAS co-factors accounted for 34% of variance in parental opinions, including the frequency of prior family communication about cancer and the likelihood of utilizing DTC genetic testing with children (R2  = 0.34, p < 0.001). Results suggest that the P-TAS remains a reliable measure to assess high-risk parents' opinions about pediatric DTC genetic testing for adult-onset conditions, with promising validity. Applications of the P-TAS include informing genetic counseling practice, pediatric medical care, and policy guidelines surrounding DTC genetic testing.

Comfort measures for peripheral I.V. catheter placement in children.

ABSTRACT: I.V. catheter placement is one of the most common causes of procedural pain in children. Interventions to address this pain are readily available but inconsistently used in practice. The focus of this article is to identify and encourage best practice for pain mitigation in peripheral I.V. catheter placement in children.

Moral Distress Entangled: Patients and Providers in the COVID-19 Era.

Moral distress is defined as the inability to act according to one's own core values. During the COVID-19 pandemic, moral distress in medical personnel has gained attention, related to the impact of pandemic-associated factors, such as the uncertainty of treatment options for the virus and the accelerated pace of deaths. Measures to provide aid and mitigate the long-term pandemic effect on providers are starting to be designed. Yet, little has been said about the moral distress experienced by patients and the relational and additive effect on provider moral distress. Pandemic-associated factors affecting moral distress in patients include the constraining effects of isolation on spiritual and religious traditions as well as the intentional separation of patients from their families. This paper will explore the idea that patients are suffering their own moral distress and further how this impacts the intensity of moral distress experienced by the providers-nurses and physicians. The paucity of research in this area with the implications on patient's distress, decision making, and distress experienced by providers compels further investigation and analysis.

Visual intelligence education using an art-based intervention: Outcomes evaluation with nursing graduate students.

BACKGROUND: Purposeful visual training is effective. Increasingly, visual arts learning interventions are used by multiple disciplines to improve observation and communication skills, critical skills in healthcare. PURPOSE: The primary aim was to evaluate enhancement of skills in the observation, perception and communication domains of visual literacy following a fine arts intervention with nursing graduate students. METHODS: An art-based intervention with five visual thinking activities was collaboratively developed with a faculty director of an arts and humanities program and museum arts educator and implemented at a gallery with 94 Post-Master's Doctor of Nursing Practice (DNP) students in advanced roles and Clinical Nurse Leader (CNL) entry-to-practice graduate students. Participation in the non-randomized, non-controlled quantitative study with pre- and post-evaluation design was voluntary. Prior to and following the session, 63 participants completed a Visual Intelligence Assessment (VIA) tool and 70 completed an Image Assessment exercise. RESULTS: Pre-intervention scores were similar for the two groups. Post intervention, DNP VIA mean scores increased from 3.58 to 3.68 (p = .057) while CNL mean VIA scores decreased from 3.65 to 3.53 (p = .08). DNP students had significantly higher image scores post-intervention (p < .001), demonstrating improved use of objective language. No difference was found in CNL image scores pre and post. CONCLUSIONS: The intervention increased self-awareness and perceived understanding of the role of VI on perception and empathy. DNP students also improved observational skills and language. Magnitude and direction of change in self-awareness appears relative to prior experience and skill.

Ethical Challenges in Independent Living Donor Advocacy.

The Independent Living Donor Advocate, who is required on the transplant team, advocates, promotes, and protects the interests of the donor. Previously described ethical challenges perceived by these advocates and the variability of their responses prompted further inquiry. RESEARCH QUESTIONS: How are ethical obligations perceived by ILDAs? What ethical principles do ILDAs identify as the basis of their decision making? What are the ethical challenges for ILDAs? STUDY DESIGN: A descriptive cross-sectional survey was designed and administered via REDCap. Participants were recruited from the National Kidney Foundation Living Donor Advocate email list. Quantitative and qualitative data on their role, ethical decision making, and perceived ethical issues, by seriousness and frequency, were collected. RESULTS: Thirty-four participants responded. Nonmaleficence was ranked as the primary ethical principle used in decision making. Participants rated obligations to protect higher than advocacy. Participants reported experiencing internal ethical conflict to protect over advocate for the donor. The most serious ethical challenge participants perceived for donors was their decisional capacity, followed by their emotional or psychological distress, which was also described as a frequent donor challenge experienced in their role. DISCUSSION: The results of this survey validate previous descriptions that the advocate role is largely perceived as protective. Their independent nature as well as the inherent vulnerabilities of the potential living donor compels the continued mitigation of ethical challenges, to enhance advocacy and protection for the living donor.

Visual intelligence education as an innovative interdisciplinary approach for advancing communication and collaboration skills in nursing practice.

BACKGROUND: Recognizing the relationship of keen observation to communication, critical thinking, and leadership in evidence-based literature, educators have expanded the use of art museums to augment visual intelligence skills. The purpose of this pilot intervention was to evaluate an innovative, interdisciplinary approach for integrating visual intelligence skills into an advanced communications and collaboration course. METHOD: Collaborating with museum educators, the intervention for doctoral students was conducted at the National Gallery of Art. The aims were to explore and evaluate observation skills, use of intentional language in communication, impact of visual intelligence on perception, and role of visual intelligence with empathy. RESULTS: Descriptive and nonparametric statistics highlighted significant differences in pre- to post-assessment scores related to the expansiveness of intentional visual observation, alternate views, perception and empathy, suggesting that visual intelligence training's impact can be identified and evaluated. CONCLUSION: Healthcare providers' ability to communicate effectively, including observing, listening, explaining, and empathizing, significantly impacts healthcare outcomes and patient perceptions of satisfaction. All educators have access to a variety of two-dimensional art and the opportunity to implement interdisciplinary learning experiences to enhance visual intelligence. The intervention was considered a successful new learning modality for advanced communications skills and was integrated into the curriculum.

Ethics in the ICU.

The power to heal and create "good" in intensive care also stimulates great ethical conflict and discourse. Palliation and end of life issues in intensive care are beginning to be clearly defined and enhanced for the good of the patients. After decades of striving to save life to the very extreme, we are now providing that same effort toward end of life care. The last decade has brought consumerism or medicine's interpretation of such, far beyond any boundaries previously imagined. Issues of power, team communication, and family decision making strategies should hold a higher priority in the ICU. Empowered nurses in authority can make the key difference in when and how ethical resolutions occur.