Being a "Good Parent" to a NICU Infant With a Major Congenital Anomaly.

BACKGROUND: In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis. PURPOSE: (1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs. METHODS: A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively. RESULTS: Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked "focusing on my child's quality of life" higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups. IMPLICATIONS FOR PRACTICE: NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences. IMPLICATIONS FOR RESEARCH: Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decision-making beliefs.

"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making.

While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.

"You think you got it down and then the moment comes": The certainty of uncertainty in end-of-life decision making.

OBJECTIVES: Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life. METHODS: The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process. RESULTS: We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician. SIGNIFICANCE OF RESULTS: Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.

A 10-year evaluation of projects in a doctor of nursing practice programme.

AIMS AND OBJECTIVES: The role of professional doctorates is receiving increased attention internationally. As part of building the rigour and scholarship of these programmes, we assessed projects undertaken as part of a doctor of nursing practice (DNP) programme at Johns Hopkins University. Recommendations for programme development in professional doctorates are provided. BACKGROUND: Past research has described the methodologic limitations and dissemination of DNP projects. However, few studies have provided recommendations for strengthening these projects and alternative strategies for achieving scale in larger student cohorts. DESIGN: A descriptive study reported in accordance with STROBE guidelines. METHODS: From 2009-2018, 191 final DNP project reports were obtained from the DNP programme administrator. Essential project characteristics from the papers were extracted, including use of theoretical framework, design, setting, sample and dissemination through publication. To determine whether the results of the projects had been published, the title and student's name were searched in Google Scholar and Google. RESULTS: Of the 191 projects, 83% focused on adults and 61% were conducted in the hospital setting. Sample sizes ranged from 7 to 24,702. Eighty per cent of the projects employed a pretest/post-test design, including both single and independent groups. The projects spanned six overarching themes, including process improvement, clinician development, patient safety, patient outcome improvement, access to care and workplace environment. Twenty-one per cent of the project findings were published in scholarly journals. CONCLUSIONS: Conducting a critical review of DNP projects has been useful in refining a strategy shifting from incremental to transformative changes in advanced practice. RELEVANCE TO CLINICAL PRACTICE: Programme evaluation is critical in order to sufficiently prepare nurses in advanced nursing practice to influence healthcare outcomes at the individual or population level.

Facilitating the Academic Success of International PhD Students.

AIM: This article discusses the challenges of international PhD nursing students and recommends strategies to support them. BACKGROUND: Approximately 10 percent of the students enrolled in research-focused nursing doctoral programs in the United States are non-US residents, challenging schools of nursing to examine ways to support these students. METHOD: We searched five electronic databases using international student* AND doctoral OR graduate as search terms; we integrated the authors' experiences. RESULTS: Faculty and peer support can promote a smooth transition into the United States. Participating on research teams or school committees promotes academic socialization. Dissertation work has multiple unique challenges, including international relevance of topics, translation, funding, and location of the research. CONCLUSION: Faculty advisers and universities can facilitate student adjustment. Once international students become familiar with the academic requirements and culture, they have the capacity to contribute rich, diverse perspectives that greatly enhance the quality of PhD education.

The relationship between alcohol use and anxiety and retrospective attendance of primary care visits among women with human immunodeficiency virus.

In this retrospective study, we sought to determine the associations between alcohol use and anxiety and RIC among WHIV. Alcohol use was assessed using the Timeline Follow-back to measure use over the 90 days preceding the interview. Anxiety symptoms scores, assessed with the Hospital Anxiety and Depression Scale- Anxiety Subscale (HADS-A). Primary care visits over twelve months prior to the interview were collected from clinic registration records. We used three logistic mixed models, adjusting for age, race, education, cocaine use, depression, viral load, and antiretroviral therapy (ART) status. Among 364 WHIV, mean attendance of primary care visits was 63.9%. Every one-day increase in drinking days (OR = 0.99, 95% CI 0.99, 1.00) or heavy drinking days (OR = 0.99, 95% CI 0.90, 1.00) was associated with decreased odds of attending primary care visits (P = 0.02). Moderate/severe anxiety scores, compared to minimal anxiety scores, were associated with decreased odds of attending primary care visits (OR = 0.69, 95% CI 0.50, 0.97). Cocaine use was associated with decreased odds of attending primary care visits (OR 0.56, 0.57). Our findings indicate that identifying and treating WHIV with alcohol use (especially heavy drinking), moderate/severe anxiety symptoms and/or cocaine use could potentially improve their RIC.

Effectiveness of self-management support in maintenance haemodialysis patients with hypertension: A pilot cluster randomized controlled trial.

AIM: Uncontrolled hypertension is an independent risk factor for cardiovascular disease and is the leading cause of mortality in haemodialysis patients. The aim of this study was to examine the effectiveness of self-management support (SMS) for blood pressure (BP) control and health behaviours. METHODS: We conducted a cluster randomized controlled trial (RCT) in which 90 adult haemodialysis patients were assigned to either an SMS or common intervention (CI) group. The SMS group received an intervention consisting of self-management education and motivational interviewing. The CI group received standard care and routine health education. The primary outcome was the BP monitored before each haemodialysis. Secondary outcomes included salt intake (measured using a balance formula), home BP monitoring (HBPM) (assessed using two self-administered questions), and medication adherence (measured using the Medication-taking Behavior Scale). Data were collected at baseline and at 1, 3 and 6 months post-intervention. RESULTS: The SMS group showed continuous reductions in systolic BP from baseline: -9.2, -8.7, and -8.4 mmHg at 1, 3 and 6 months after the intervention, respectively (P < 0.01). Compared with the CI group, the SMS group had a greater decrease in systolic BP at 1 month: -5.9 mmHg (P = 0.0388), but no significant difference was found at 3 or 6 months (P > 0.05). SMS patients showed an improvement in health behaviours relative to baseline (less salt intake, more consistent HBPM, and greater medication adherence) (P < 0.05). CONCLUSIONS: Self-management support obtained short-term success in improving salt restriction, regular performance of HBPM and medication adherence, which led to better BP control.

Heart Failure Rehospitalization and Delayed Decision Making: The Impact of Self-care and Depression.

BACKGROUND: Rehospitalization soon after discharge can be distressing for persons with heart failure (HF) and places a heavy burden on the healthcare system. OBJECTIVE: We investigated and explored the association of self-care decision making variables with (1) rehospitalization within 30 days of discharge and (2) delay in seeking medical assistance (delayed decision making). METHODS: A cross-sectional, explanatory sequential mixed methods design (quan > qual) was used to survey 127 hospitalized HF patients and interview 15 of these participants to explain their survey responses. The survey assessed rehospitalization within 30 days of discharge, delayed decision making, HF self-care, and psychosocial factors influencing self-care. RESULTS: The likelihood of delaying the decision to be hospitalized was more than 5 times higher among those with high depressive symptoms (odds ratio, 5.33; 95% confidence interval, 2.14-13.28). Those who delayed going to the hospital were uncertain about their prognosis and did not feel their symptoms were urgent. The likelihood of being rehospitalized within 30 days was more than doubled among those with high depressive symptoms (OR, 2.31; 95% confidence interval, 1.01-5.31). Those who were rehospitalized within 30 days were less likely to consult healthcare professionals in their decision making and wanted immediate relief from their symptoms. CONCLUSIONS: We recommend a patient-centered approach to help HF patients identify and adequately self-manage symptoms. The strong association between high depressive symptoms and rehospitalization within 30 days as well as delayed decision making highlights the critical need for clinicians to carefully assess and address depression among HF patients.

Using vignettes to understand heart failure self-care.

AIMS AND OBJECTIVES: To explore hospitalised heart failure (HF) patients' self-care decisions. BACKGROUND: Heart failure self-care is integral to maintain and manage health, and may prevent unnecessary HF hospitalisations. Nevertheless, self-care remains challenging for patients, and using vignettes offer a new perspective to understand patient HF self-care decision-making. DESIGN: This qualitative descriptive analysis was conducted as part of a mixed methods study. METHODS: We conducted semi-structured interviews (N = 20) to elicit patient decisions about self-care in responses to three vignettes, which varied in symptom severity. Content analysis was used to extract quotes describing participant responses. RESULTS: Participants were on average 60 years old, primarily male, African American, unemployed and highly symptomatic (NYHA Class III or IV). Overall, participants were able to identify when symptoms required a decision to seek urgent medical attention, but had difficulty identifying the appropriate decision to make in response to less acute symptoms such as swelling. CONCLUSIONS: Symptoms other than shortness of breath were challenging for patients to interpret and manage appropriately. Understanding how to apply HF knowledge to alleviate symptoms was also difficult. RELEVANCE TO CLINICAL PRACTICE: Vignettes may be a helpful tool to prompt patient-healthcare provider communication about self-care management and prompt discussions about appropriate self-care decisions in response to varying levels of symptom severity.

Decision making about Pap test use among Korean immigrant women: A qualitative study.

BACKGROUND: Understanding how individuals make decisions about Pap tests concerning their personal values helps health-care providers offer tailored approaches to guide patients' decision making. Yet research has largely ignored decision making about Pap tests among immigrant women who experience increased risk of cervical cancer. OBJECTIVE: To explore decision making about Pap tests among Korean immigrant women. METHODS: We conducted a qualitative descriptive study using 32 semi-structured, in-depth interviews with Korean immigrant women residing in a north-eastern metropolitan area. Data were audio-recorded, transcribed verbatim and analysed using inductive coding. RESULTS: Although most women with positive decisions made their own decisions, some women deferred to their providers, and others made decisions in collaboration with their providers and significant others. While women making positive decisions tended to consider both barriers to and facilitators of having Pap tests, women making negative decisions predominantly discussed the barriers to having Pap tests, such as modesty and differences between the South Korean and US health-care systems. The women's reflections on their decisions differed regarding their Pap test decisions. CONCLUSIONS: Women's desired roles in the decision-making process and reflection on their decision outcome appeared to vary, although most participants with positive decisions made their own decisions and were satisfied with their decisions. Future research should conduct longitudinal, quantitative studies to test our findings regarding decision-making processes and outcomes about Pap tests. IMPLICATIONS: The findings should be incorporated into cervical cancer screening practices to fulfil the unmet needs of immigrant women in patient-provider communication and to facilitate women's decision making about Pap tests.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients.

OBJECTIVE: There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney. METHOD: A convenience sample of 206 caregiver-patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion. RESULTS: Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place. SIGNIFICANCE OF RESULTS: Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Intramolecular Direct Arylation of 3-Halo-2-pyrones and 2-Coumarins.

Direct arylation represents a favorable alternative to traditional cross-coupling and has found widespread use with simple aryls and robust heterocycles. Herein a direct arylation protocol has been optimized and applied to 2-pyrones, which are delicate and privileged biological motifs. Regioselective halogenation at the 3-position allows intramolecular coupling by activation of a pyrone C-Br or C-Cl bond and a phenoxy C-H bond. Importantly, electron-poor phenoxy substrates also worked well. The methodology was extended to 2-coumarins and applied to the synthesis of flemichapparin C and a novel analogue. Deuterium isotope effects, typical of a concerted metalation-deprotonation (CMD) mechanism, were observed in the case of a bromopyrone, but a highly unusual, inverse kinetic isotope effect was evident using a chlorocoumarin, implying that a different mechanism is operating.

The impact of pediatric blood and marrow transplant on parents: introduction of the parent impact scale.

BACKGROUND: Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. METHODS: This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. RESULTS: PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). CONCLUSIONS: Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.

Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF.

PURPOSE: National reports on end-of-life symptom management reveal a gap in the evidence regarding symptoms other than pain and studies of diseases other than cancer. This study examines the frequency and severity of symptoms and quality of life (QOL) in persons with advanced cancer, amyotrophic lateral sclerosis (ALS), and congestive heart failure (CHF). METHODS: The present study is a cross-sectional examination of symptoms and QOL measured using the McGill QOL Questionnaire, among 147 participants. RESULTS: Forty one percent of participants had advanced cancer, 22% had ALS, and 37% had advanced CHF. A total of 266 symptoms were reported, with the common symptom categories being discomfort/pain, weakness/fatigue/sleep, and respiratory. Participants with CHF had the highest mean symptom severity and the lowest QOL. CONCLUSION: Clinicians should be aware and attentive for symptoms other than pain in patients with advanced illness. Studies on diseases other than cancer, such as CHF and ALS, are important to improve symptom management in all disease groups.

Health transitions in recently widowed older women: a mixed methods study.

BACKGROUND: Older recently widowed women are faced with increased health risks and chronic conditions associated not only with bereavement, but also, older age. Loss and grief, adjusting to living alone, decreased income, and managing multiple chronic conditions can impact on older women's ability to transition following recent spousal bereavement. Providing appropriate, timely, and effective services to foster this life transition is of critical importance, yet few services directed towards these women exist in Australia, and there is little data describing the experiences of women and their support needs at this time. METHODS: We conducted a longitudinal mixed method study using in-depth semi-structured interviews and questionnaires that were administered three times over a twelve month period to understand the experiences and needs of older women in the period following their husbands' deaths. Descriptive statistics and Interpretive Phenomenological Analysis were used to analyse quantitative and qualitative data, respectively, prior to data integration. RESULTS: Participants were twenty-one community-dwelling recently widowed older women who were an average age of 71 (SD 6.13) years. The majority of participants scored within normal ranges of depression, anxiety, and stress, yet a subset of participants had elevated levels of each of these constructs (37%, 27%, and 19%, respectively) throughout the study period. Positive self-reports of general health predominated, yet 86% of participants were living with one or more chronic condition and taking an average of 4 medications per day. The majority (76%) experienced exacerbations of existing conditions or were diagnosed with a new illness in the early bereavement period, leading to planned and unplanned hospitalisations and other health service use. Qualitative data provided insight into these experiences, the meanings women ascribed to them, and their reasons for enacting certain health risk behaviours. CONCLUSIONS: The combination of co-morbidities, polypharmacy, and risk behaviors impacted on medication management and appeared associated with health events. The feminization of ageing and an increasing number of older women living alone with multiple chronic conditions represent significant challenges to health services and societal support systems. Older women's transition to widowhood signals concomitant health transitions and multidimensional support needs.

An integrative and socio-cultural perspective of health, wealth, and adjustment in widowhood.

Women comprise a larger proportion of the ageing population than men, often outlive their spouses, and face a variety of challenges upon widowhood. Discrete aspects of the health impact of widowhood have been described in the literature; however, the expanse of sociocontextual issues that impact on older women's adjustment is less prominent. We undertook a literature review to synthesize recent research and interventions and identify current trends and gaps in knowledge and services. Although many health, social, cultural, and economic factors impact on recently widowed older women throughout the world, we found that few interventions targeting this population incorporate these factors.

"They Would Lift My Spirits": Sources of Support for Family Surrogate Decision-Makers at the End of Life.

Surrogate decision-makers make critical decisions for loved ones at the end of life, and some experience lasting negative psychological outcomes. Understanding whom they rely on for support and the types of support they value may inform nursing care and that of other health team members who work with surrogates. The purpose of the study was to explore decision support and other types of support provided to surrogate decision-makers at the end of life of their loved one and perceived usefulness of the support. This secondary analysis of data from a mixed-methods study involved the examination of the transcripts of qualitative interviews with 13 surrogate decision-makers in the United States, conducted between 2010 and 2014. A constant comparative method was used to identify common themes surrounding surrogate decision support at the end of life. Surrogates valued advance directives and conversations with their loved one about treatment preferences. Surrogates described involving many different types of people in decision-making and other types of support. Finally, surrogates appreciated being reassured that they were doing a good job in making decisions and seemed to seek out this type of affirmation from various sources including the health care team, family, and friends. Nurses are well-positioned to provide this affirmation because of the time that they spend caring for the patient and family. Future research should further explore the concept of affirmation of surrogates in their role as a means of support as they make decisions for a loved one.

Effect of a study map intended to support informed consent in transplant research.

CONTEXT: Research participants' informed consent is integral to the protection of human subjects; studies exploring the enhancement of standard informed consent processes have had mixed success in increasing patients' understanding of complex research protocols. OBJECTIVE: To determine the effect of a "study map," a flow diagram of a research protocol, on research participants' understanding of research purpose and procedures. DESIGN: This study was an experimental posttest-only design using 30 research participants enrolling in a study of decision making and recovery among living kidney donors. Participants were randomly assigned to the standard care group (verbal description with consent documents) or the experimental group (standard of care plus study map). An instrument measured perceived and objective understanding, and the differences between groups were determined by an independent t test. DISCUSSION: The high level of comprehension in the control group made detecting improvements in understanding difficult. Objective knowledge and perceived understanding were positively related, suggesting the importance of periodically confirming comprehension with research participants during the informed consent process. Future research should examine the effect of study maps in patients with lower educational levels. RESULTS: Knowledge levels were high in all participants (mean objective = 3.7 on a 5-point scale, SD = 1.02; mean subjective = 9.3 on a 10-point scale, SD = 1.29). There was a significant relationship between objective knowledge and perceived understanding (r = 0.56, P = .001); however, the study map itself had no significant effect on objective or perceived understanding.