Emerging Frontline Leaders' Voices in Response to COVID-19 Crisis.

BACKGROUND: The COVID-19 pandemic has significantly affected healthcare institutions, introducing new challenges for nurse leaders and their colleagues. However, little is known about how the pandemic has specifically affected the lives of these leaders and what methods and strategies they are using to overcome pandemic-related challenges. OBJECTIVES: The aim of this study was to examine the effect of the 2019 pandemic on emerging healthcare leaders and highlight methods and strategies they used to overcome pandemic-related challenges. METHODS: The participants in this study represent a diverse group of interprofessional healthcare faculty enrolled in a transformational leadership course (Paths to Leadership) when the pandemic first appeared. Three months into the pandemic, the leadership cohort was invited to participate in this qualitative study, exploring four questions: Q1: How have you transformed your working styles in response to the pandemic? Q2: How have you adjusted your personal life in response to the pandemic? Q3: How have you used leadership skills learned from Paths to Leadership during the pandemic? Q4: What lessons have you learned from the pandemic? Participant narratives were analyzed by a team of nurse researchers using conventional qualitative content analysis. RESULTS: Themes for Q1 (working styles) included shifted from face-to-face to telework, faced novel disease and decisions, worked more from home, and challenged to maintain contact with professional peers and team. Themes for Q2 (personal life) included accommodate adults working and children learning from home, looked for and found the positive, and continue to struggle. Themes for Q3 (leadership skills) included reflective practice, listening, holding, and reframing. Finally, themes for Q4 (pandemic lessons) included leadership, human connection, be prepared, taking care of ourselves, and connecting with nature. DISCUSSION: The 2019 pandemic brought hardships and opportunities to faculty members enrolled in an interprofessional transformational leadership course. In conjunction with this course, the pandemic provided a unique opportunity for participants to apply newly acquired relationship building, positive organizational psychology, and reframing skills during a time of crisis. Nursing leaders, whose educational offerings may be immediately "put to the test," may find our lessons learned helpful as they develop strategies to cope with unanticipated future challenges.

A closer look at quality of life in the hepatocellular carcinoma literature.

PURPOSE: Adults with hepatocellular carcinoma (HCC) have a high symptom burden. Their quality of life (QOL) has been shown to be significantly impacted by both the disease and its treatment, adding to the high symptom burden that these patients experience. The primary aims of this paper are as follows: (1) to identify how QOL is being defined in HCC literature and (2) to identify how QOL is being measured in the HCC literature using Ferrell's model of QOL. METHODS: A systematic review was completed of relevant studies published after 2014, using PubMed, CINHAL, and PsycInfo. Relevant studies were reviewed by 2 reviewers using PRISMA guidelines. RESULTS: From a total of 1312 papers obtained in the initial database search, 30 met inclusion criteria and are included in this review. From the included articles, 10% included a definition of QOL and 3% addressed the spiritual domain of QOL. Majority of study participants were in the early stage of HCC, though the majority of adults with HCC are diagnosed in the advanced stage. Only 3% of included studies included greater than 22% population of advanced stage of HCC. CONCLUSION: The results of this systematic review demonstrate the need for future research into QOL in the advanced stage of QOL. It also identified gap in the literature concerning the definition of QOL in HCC and the spiritual domain of QOL in HCC.

Using poetry as data to explore daily and formal care decision making within African American dementia dyads.

There is limited research exploring how daily and formal care decision making occurs within African American dementia dyads as well as how these dyads navigate decision making across the dementia trajectory. Through semi-structured interviews, five African American dementia dyads shared their decision-making processes. We used a multimethod approach to the analysis of data, including qualitative and quantitative content analysis and the creation of I Poems. This novel use of I Poems provided a uniquely personal account of the lived experiences of the African American persons living with dementia, while other analyses revealed that within dyads, daily care decision making was led by African American persons living with dementia, whereas formal care decision making varied between dyads. There was intra-dyad congruence regarding who the final decision maker was in daily and formal care. Clinicians and researchers may be able to tailor interventions based on the dyad's involvement in these decision-making processes.

Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with Vascular Ehlers-Danlos Syndrome.

BACKGROUND: Patient-centered research requires active engagement of patients. The vascular Ehlers-Danlos Syndrome (vEDS) research collaborative was established to ascertain patient-centered vEDS research priorities and to engage affected individuals as research partners. Evaluation of access to information and interest in research among individuals with vEDS was the first step undertaken as part of this work. METHODS: A 28-question survey was created to evaluate 4 domains of interest: diagnostic and clinical care history, vEDS experience, information resources, and willingness to collaborate with researchers. The survey was created in REDCap™ and disseminated between January and April 2018 via the vEDS social media pages, blogs, and advocacy Web sites. Results were collated and described. A single open-ended question yielded additional narrative data, which were analyzed qualitatively. RESULTS: Of the 300 responses, 228 (76%) were completed on behalf of oneself. The vEDS diagnosis was confirmed by genetic testing for 85% of respondents. When asked "Did a physician explain vEDS to you and how to manage it?" 25% answered no. Most had a primary care provider (65%), cardiologist (56%), and vascular surgeon (52%). Only 32% had a local vascular surgeon. The most commonly reported frustration was no cure/treatment available and the emergency rooms do not know what VEDS is (64.5% and 61.8%, respectively). The Internet was the most useful information source (62.3%) followed by a geneticist (18.4%). Most (87.7%) are willing to share their medical records for research studies (87.7%) and wished to be contacted about future studies (83.8%); however, only 65.4% would be willing to upload medical records via a secure confidential Web application. The most common reason for interest in research partnership was to advance research for a treatment/cure (83.8%) and helping others learn from their experiences (82.9%). The qualitative analysis provided additional insights into the patient experience living with vEDS. CONCLUSIONS: Among individuals with vEDS, there is substantial frustration with the lack of treatment, lack of knowledge among health care providers, and a high degree of interest in research involvement. The survey highlights an opportunity to discuss the optimal modality for research participation and methodologies for building trust in the research teams. The methodology lessons learned can also be applied to other rare vascular diseases.

The effect of video-mediated communication on father-infant bonding and transition to fatherhood during and after Satogaeri Bunben.

AIMS: The study aimed to explore the effect of video-mediated communication on father-infant bonding and transition to fatherhood during and after Satogaeri Bunben. BACKGROUND: Satogaeri Bunben is a Japanese perinatal tradition that results in the pregnant wife and husband living apart, which may interfere with father-infant bonding and transition to fatherhood. DESIGN/METHODS: A mixed-methods study was conducted from July 2012 to November 2015. Participants were divided into two groups (Treatment/Control). Quantitative data included Taiji kanjyo Hyotei Syakudo (TKHS) , communication methods, husband's visitation records and video-mediated communication records and satisfaction of video-mediated communication experience. Qualitative data included participants' journal entries about their experience and feelings toward their infants during Satogaeri Bunben. RESULTS: Fourteen treatment and thirteen control dyads/couples participated in the study. There were significant differences between groups in the frequency of fathers' visitation during Satogaeri Bunben, as well as on the THKS between groups in cross-sectional analysis and in treatment group in longitudinal analysis. Fathers' journal entries revealed the use of video-mediated communication in both groups, specifically commenting about these experiences and the impact of additional visual cues when communicating. CONCLUSION: Video-mediated communication provides a sense of virtual co-presence, which may help support father-infant bonding and transition to fatherhood; however, it does not completely substitute for face-to-face interaction.

Economic models for sustainable interprofessional education.

Limited information exists on funding models for interprofessional education (IPE) course delivery, even though potential savings from IPE could be gained in healthcare delivery efficiencies and patient safety. Unanticipated economic barriers to implementing an IPE curriculum across programs and schools in University settings can stymie or even end movement toward collaboration and sustainable culture change. Clarity among stakeholders, including institutional leadership, faculty, and students, is necessary to avoid confusion about IPE tuition costs and funds flow, given that IPE involves multiple schools and programs sharing space, time, faculty, and tuition dollars. In this paper, we consider three funding models for IPE: (a) Centralized (b) Blended, and (c) Decentralized. The strengths and challenges associated with each of these models are discussed. Beginning such a discussion will move us toward understanding the return on investment of IPE.

"Who Are You From?": The Importance of Family Stories.

This article emphasizes the importance of family stories, or intergenerational narratives, and their health benefits across the lifespan. Knowing and sharing the story of who you are from complements the current focus on knowing and sharing one's geographic heritage, or where you are from. Knowing one's family stories creates meaning that goes beyond the individual to provide a sense of self, through time, and in relation to family. This expanded sense of self is referred to as our intergenerational self, which not only grounds an individual but also provides a larger context for understanding and dealing with life's experience(s) and challenges. This connection across generations appears to contribute to resilience at all stages of life. This shift in focus challenges family nurses to rethink and/or prioritize the use of family stories as a key health-promoting intervention for not only children but also their parents, and their parents' parents.

Testing the committee approach to translating measures across cultures: Translating primary communication inventory from English to Japanese.

This paper presents the initial translation process and follow-up psychometric evaluation of the Japanese version of the Primary Communication Inventory (J-PCI). The J-PCI was developed using the committee approach to translation and then used in a study exploring Japanese couples' communication satisfaction while separated during Satogaeri Bunben - a Japanese perinatal tradition. The committee approach attends to cultural nuance and context and is especially useful when languages have dissimilar linguistic roots and cultures, such as Japanese and English. The translation process and evaluation included five steps; (i) selection of the original PCI for research; (ii) selection of translators; (iii) development of the J-PCI using a committee approach; (iv) an initial small pilot study; and (v) a larger follow-up study. The J-PCI has good initial validity and reliability, although some nuances were observed in scoring.

Diabetes self-management: using the Colored Eco-Genetic Relationship Map to assess social support.

BACKGROUND: The positive association between individual social support and diabetes health outcomes is well established. However, most tools for assessing social support are highly structured and are rarely used in clinical settings and/or clinical outcomes research. A novel tool that has been shown to engage patients in the identification and use of their social networks is the Colored Eco-Genetic Relationship Map (CEGRM). OBJECTIVE: The purpose of this pilot study was to explore the feasibility of using the CEGRM adapted for eliciting information about how individuals with diabetes use their social networks to support their self-management efforts. METHODS: A sample of 18 adult patients with diabetes completed the newly created diabetes-CEGRM (D-CEGRM) alongside structured questions regarding social support for diabetes self-management. RESULTS: Whereas structured questions elicited information about participants' use of social networks, the D-CEGRM expanded on answers from structured questions by identifying both positive and negative aspects of social support, additional individual and community-based resources, and nuanced interpersonal information about the individuals involved. DISCUSSION: The D-CEGRM appears to be feasible and useful in assessing the social networks of adults with diabetes and how they are used to support tasks related to self-management. The information elicited by completing the D-CEGRM expanded on information collected through structured questions about social support in a way that might better address research questions and inform clinical decision making.

A committee approach maintaining cultural originality in translation.

Various methods have been used to translate existing assessment tools and clinical nursing materials from one language to another. The method of choice depends on the research objectives, availability of translators, budget, and time. We highlight our experience using the committee approach to translation. This less commonly used approach introduces the concept of cultural consensus building early in the translation process, which is particularly appropriate when languages are culturally and linguistically distant. Our experience centers on the translation of the Primary Communication Inventory (PCI), from English to Japanese, to study first-time parents in Japan.

Examining Cesarean Among Individuals of Advanced Maternal Age in Nurse-Midwifery Care.

INTRODUCTION: Cesarean rates are rising, especially for individuals of advanced maternal age (AMA), defined as aged 35 or older. The Robson 10-Group Classification System (TGCS) facilitates assessment and comparison of cesarean rates among individuals in different settings. In midwifery-led care, in which pregnant people are typically healthier and seek a vaginal birth, it is unknown whether individuals of AMA have different antecedents leading to cesarean compared with younger counterparts. This study aimed to examine antecedents contributing to cesarean using Robson TGCS for individuals across age groups in midwifery care. METHODS: This study was a secondary analysis of 2 cohort data sets from Oregon Health & Science University (OHSU) and University of Michigan Health Systems (UMHS) hospitals. The samples were individuals in midwifery-led care birthing at either OHSU from 2012 to 2019 or UMHS from 2007 to 2019. RESULTS: A total of 11,951 individuals were studied. Overall cesarean rates were low; however, the rate for individuals of AMA was higher than the rate of their younger counterparts (18.30% vs 15.10%). The Robson groups were similar; however, the primary contributor among AMA individuals was group 5 (multiparous with previous cesarean), followed by group 2 [nulliparous with labor induced or prelabor cesarean], and group 1 [nulliparous with spontaneous labor]. In contrast, the primary contributors for younger individuals were groups 1, 2, and 5, respectively. In addition, prelabor cesarean and induced labor partly mediated the relationship between AMA and cesarean among nulliparous individuals, whereas prelabor cesarean was the key contributor to cesarean among multiparous people. DISCUSSION: The cesarean rate in midwifery-led care was low. Using Robson TGCS provided additional insight into the antecedents to cesarean, rather than viewing cesarean as a single outcome. Future studies should continue to use Robson TGCS and investigate antecedents to cesarean, including factors influencing successful vaginal birth after cesarean in individuals of AMA.

An Innovative Educational Intervention for Pediatric Nurse Practitioner Faculty to Meet Social Justice Curriculum Standards.

The association between adverse childhood experiences and negative health outcomes is a public health concern, particularly affecting disadvantaged groups and contributing to health disparities. Pediatric nurse practitioners are well-positioned to address this issue, emphasizing the importance of incorporating social justice concepts into nursing education to develop a pediatric workforce with the necessary skills to curb health disparities. However, evidence-based approaches to incorporating these concepts into pediatric nursing education are limited. To address this gap, we describe an innovative educational intervention that harnesses the power of narratives to empower future pediatric nurse practitioners as champions of social justice and health equity.

A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins.

INTRODUCTION: Parents who use donated gametes or embryos to form their families struggle with telling their children about their genetic origins. We developed the Tool to Empower Parental Telling and Talking (TELL Tool) to support parents in disclosure to their children and an eBook attention control. METHOD: A randomized parallel, two-group, attention-controlled clinical pilot trial was conducted online during COVID-19. Feasibility, acceptability, and preliminary effects among parents with children aged 1-16 years were examined. RESULTS: Over 10 months, our target of 75 parents were enrolled (85% of eligible [95% confidence interval (CI), 76% to 91%]), and 68% (95% CI: 57% to 78%) were retained at 12 weeks. At 4 and 12 weeks, positive trends were found for parental disclosure, telling confidence, and anxiety compared with attention controls. DISCUSSION: The study protocol is feasible, and the TELL Tool is acceptable to parents and demonstrates a positive effect on parents' ability to tell their children. The results support the implementation of a large efficacy trial.

A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.

Next generation sequencing offers benefit of improved health through knowledge, but comes with challenges, such as inevitable incidental findings (IFs). The applicability of recommended criteria for disclosure of individual results when applied to disclosure of IFs is not well known. The purpose of this study was to examine how medical genetic specialists, genomic researchers, and Institutional Review Board (IRB) chairs perceive the importance of recommended criteria when applied to genetic/genomic IFs. We conducted telephone interviews with medical genetic specialists (genetic counselors, genetic nurses, medical geneticists, laboratory professionals), genomic researchers, and IRB chairs (N = 103). Respondents rated and discussed the importance of nine recommended criteria regarding disclosure of genetic/genomic IFs. Stakeholders agreed the most important criteria for disclosure were: (1) the IF points to a life-threatening condition; (2) there is a treatment; (3) individuals indicate in writing they wanted to be informed of IFs. Criteria rated less important were: analytic validity, high penetrance, association with a young age of onset and relative risk more than 2.0. Respondents indicated that some technical criteria were confusing, and in need of context. Our findings suggest that development of guidelines regarding management of IF include multiple stakeholders' perspectives and be based on a common language.

Strategies used by teens growing up in families with Huntington disease.

The purpose of this study was to identify helpfulness of strategies used by teens growing up in families with Huntington disease (HD). Forty-four participants responded to a mailed HD Family Survey-Teens Strategies. Strategies were those with strong positive correlation between use and perceived helpfulness, and those with negative or inverse relationships. Obtaining information, thinking about or doing something else, and actions on behalf of the parent with HD were rated as highest use and perceived helpfulness. Emotional suppression had high use but low helpfulness. Participants reported using numerous helpful strategies. Social support was often unavailable to help manage teen concerns.

Children 'draw-and-tell' their knowledge of genetics.

The purpose of this study was to explore children's early understanding of basic genetic/genomic concepts using an innovative, child-sensitive approach to data collection. Exploratory, qualitative study using art-based "Draw-and-Tell Conversation" interviews with children were used. Each conversational interview was guided by two drawing completion tasks and a semi-structured interview guide. Data were analyzed using qualitative content analysis. In this study, 27 children 7 to 10 years of age shared their understanding of basic genetic/genomic concepts in their drawings and conversations. Data were organized into four categories: 1) Inside the Body, 2) Under the Microscope, 3) It's Genetic, and 4) In Our World. Using a child-sensitive approach to data collection, children revealed a range of understanding about basic genetic concepts, including DNA, disease causation, risk, and inheritance. Data suggest informal family conversations and media exposure inform children's early understanding, highlighting the need to be aware of the sources and content of information available to children. Nurses play a central role in assessing children's genetic/genomic knowledge. The Draw-and-Tell Conversation is a novel approach that can be used to support parents as they approach and discuss genetic concepts with their children.

Development of the Tool to Empower Parental Telling and Talking (TELL Tool): A digital decision aid intervention about children's origins from donated gametes or embryos.

Objective: This study aimed to create and develop a well-designed, theoretically driven, evidence-based, digital, decision Tool to Empower Parental Telling and Talking (TELL Tool) prototype. Methods: This developmental study used an inclusive, systematic, and iterative process to formulate a prototype TELL Tool: the first digital decision aid for parents who have children 1 to 16 years of age and used donated gametes or embryos to establish their families. Recommendations from the International Patient Decision Aids Standards Collaboration and from experts in decision aid development, digital health interventions, design thinking, and instructional design guided the process. Results: The extensive developmental process incorporated researchers, clinicians, parents, children, and other stakeholders, including donor-conceived adults. We determined the scope and target audience of the decision aid and formed a steering group. During design work, we used the decision-making process model as the guiding framework for selecting content. Parents' views and decisional needs were incorporated into the prototype through empirical research and review, appraisal, and synthesis of the literature. Clinicians' perspectives and insights were also incorporated. We used the experiential learning theory to guide the delivery of the content through a digital distribution plan. Following creation of initial content, including storyboards and scripts, an early prototype was redrafted and redesigned based on feedback from the steering group. A final TELL Tool prototype was then developed for alpha testing. Conclusions: Detailing our early developmental processes provides transparency that can benefit the donor-conceived community as well as clinicians and researchers, especially those designing digital decision aids. Future research to evaluate the efficacy of the TELL Tool is planned.

A practical first step to integrating genetics into the curriculum.

We conducted a systematic literature review to identify tools that could be used to measure faculty and undergraduate nursing students' genetic literacy, and we assessed the utility of one of those tools, the Genetic Literacy Assessment Instrument (GLAI), with faculty and students at a college of nursing in a large public university. No significant differences were noted between faculty and students in terms of their overall scores on the GLAI. On average, faculty answered 76% of the questions correctly and students answered 73% of the questions correctly. Both groups scored highest in the genetics and society domain (93% and 85% correct answers for faculty and students, respectively) and lowest in the evolution domain (52% correct for both groups). The GLAI may be used to evaluate curricula for strengths and deficiencies, as well as to identify students and faculty in need of additional instruction.

Systematic Review of Self-Report Measures of Maternal Self-Efficacy.

OBJECTIVE: To synthesize the literature to identify self-report measures used to assess maternal self-efficacy (MSE) among mothers of infants 0 to 1 year of age. DATA SOURCES: OVID (MEDLINE), CINAHL, PsycINFO, Scopus, Google Scholar. STUDY SELECTION: We searched for research articles that included self-report measurement of MSE and were published from January 2000 to September 2021. We selected this time frame to focus on a contemporary context and to build on an earlier systematic review of self-report measures of self-efficacy in parents that captured a subset of MSE measures across a broader time period (1970-2016). DATA EXTRACTION: We extracted measures of MSE with descriptive details, including level of self-efficacy assessed (e.g., global, domain-specific, task-specific), concept(s) assessed, reliability, eligible age ranges, instrument origins, development, use, and translations. DATA SYNTHESIS: In many studies of MSE, researchers used measures not specifically designed for self-efficacy and instead used measures for closely related concepts such as confidence or competence. We identified only four measures that were used to assess MSE among mothers of infants. Among these, we found variation in the level of self-efficacy being measured and the intended age range. Importantly, we also found that measures of MSE were primarily validated for use within Western and/or English-speaking cultures/countries. CONCLUSION: We identified four instruments to measure MSE in mothers of infants, and each has strengths and weaknesses. Future researchers should focus on clear conceptual and operational alignment between MSE and its measurement; the development of an English, task-specific MSE measure; and further development and testing of measures of MSE outside of Western and/or English-speaking cultures/countries.

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking.

OBJECTIVE: To conduct an alpha test of the prototype of a digital decision aid to help parents disclose donor conception to their children, the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool). DESIGN: Convergent mixed-methods design. SETTING: Virtual interviews in places convenient to the participants. PARTICIPANTS: A purposeful sample (N = 16) of nine gamete-donor and embryo-recipient parents and eight clinicians, as one parent was also a clinician. METHODS: We conducted cognitive interviews to explore participants' perceptions about the TELL Tool prototype and observe patterns of use. The International Patient Decision Aid Standards (i.e., usability, comprehensibility, and acceptability) guided the development of the qualitative interview guide and directed the qualitative analysis. We also collected data about participants' perceptions and ratings of the helpfulness of each of the prototype's webpages regarding parents' decision making about disclosure. Descriptive statistics were used to analyze the helpfulness ratings before we merged the two data sets to optimize understanding. RESULTS: Participants reported that the TELL Tool was a helpful digital decision aid to help parents tell their children how they were conceived. Most (93.7%) webpage rating scores indicated that the content was very helpful or helpful. The participants identified content and technical areas that needed refinement and provided specific recommendations such as adding concise instructions (usability), tailoring adolescent language (comprehensibility), and softening verbiage (acceptability). CONCLUSION: Alpha testing guided by the International Patient Decision Aid standards was an essential step in refining and improving the TELL Tool prototype before beta testing.