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.

Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life.

Background and Objectives: The clinical progression of severe dementia frequently leads to situations where surrogate decision makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition. Research Design and Methods: We retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 and 2015 whose next-of-kin reported a need for surrogate decision making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments. Results: Compared to patients who were cognitively normal near the end of life (n = 1 198), patients with severe dementia (n = 722) were less likely to experience burdensome treatments (18% [95% confidence interval {CI} 14-21] vs 32% [95% CI 29-35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision makers or when decision makers were informed by advance directives. However, among decedents with normal cognition, a single decision maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death. Discussion and Implications: Surrogate decision makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision makers and availability of advance directives. However, both advance directives and single decision makers were associated with less aggressive care for cognitively normal decedents.

"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.

Integrative review of school integration support following pediatric cancer.

PURPOSE: This study aims to understand parents' experiences of school integration support for their child's transition to K-12 schooling during or after cancer treatment. METHODS: This integrative literature review used PubMed, CINAHL, PsycINFO, and Embase databases and included articles from January 2000 to July 2022 describing parent experiences with support from healthcare providers, school faculty/systems, and school integration programs. This review was guided by an adapted School Re-Entry Model and used constant comparison to identify common themes and guide synthesis. The Johns Hopkins Evidence and Quality Guide was used to appraise article quality and level of evidence. RESULTS: Thirty-five articles were included in the final review: seventeen qualitative, fourteen quantitative, and four mixed or multi-method designs. Parents reported experiences receiving support from healthcare providers, school faculty/systems, school integration programs, and "other" sources. Parents reported both facilitators and barriers to communication, knowledge, and the process of receiving school integration support. CONCLUSIONS: Parents found neuro/psychologists highly supportive but reported limited support from other healthcare providers. Most parents reported mixed experiences with school faculty and reported many barriers to school system support. Parents reported positive experiences with school integration programs; however, limited programs were available. IMPLICATIONS FOR CANCER SURVIVORS: Future programs and research should focus on addressing identified barriers and facilitators of school integration support. Further work is also needed to understand a wider range of parent experiences during school integration.

"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.

Retrospective national cohort study of pregnancy outcomes for women with type 1 and type 2 diabetes mellitus in Republic of Ireland.

AIM: Report the outcomes of pregnant women with type 1 and type 2 diabetes and to identify modifiable and non-modifiable factors associated with poor outcomes. METHODS: Retrospective analysis of pregnancy preparedness, pregnancy care and outcomes in the Republic of Ireland from 2015 to 2020 and subsequent multivariate analysis. RESULTS: In total 1104 pregnancies were included. Less than one third attended pre-pregnancy care (PPC), mean first trimester haemoglobin A1c was 7.2 ± 3.6% (55.5 ± 15.7 mmol/mol) and 52% received pre-conceptual folic acid. Poor preparation translated into poorer pregnancy outcomes. Livebirth rates (80%) were comparable to the background population however stillbirth rates were 8.7/1000 (four times the national rate). Congenital anomalies occurred in 42.5/1000 births (1.5 times the background rate). More than half of infants were large for gestational age and 47% were admitted to critical care. Multivariate analyses showed strong associations between non-attendance at PPC, poor glycaemic control and critical care admission (adjusted odds ratio of 1.68 (1.48-1.96) and 1.61 (1.43-1.86), p < 0.05 respectively) for women with type 1 diabetes. Smoking and teratogenic medications were also associated with critical care admission and hypertensive disorders of pregnancy. CONCLUSION: Pregnancy outcomes in women with diabetes are suboptimal. Significant effort is needed to optimize the modifiable factors identified in this study.

"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.

Strategies for success in a nursing PhD program and beyond.

PURPOSE: The purpose of this article is to inform newly enrolled PhD students of program expectations, strategies for success, and next steps in the career of a nurse scientist. METHODS: We used empirical evidence and insights from the authors to describe strategies for success during a nursing PhD program and continued career development following graduation. FINDINGS: Measures of success included maintaining health, focus, integrity, and a supportive network, identifying mentors, pursuing new knowledge and advancing research to transform health outcomes. CONCLUSION: Nursing PhD programs help to shape future researchers and leaders. Choosing to obtain a PhD in nursing is an investment in oneself, the discipline, and the science. CLINICAL RELEVANCE: Nursing PhD programs offer opportunities to advance science, impact healthcare and health outcomes, and prepare for a variety of career opportunities. Informing newly enrolled PhD students may better prepare them for what lies ahead and facilitate student retention.

Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.

CONTEXT: Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican. OBJECTIVES: We describe how older adult physicians as prospective patients (hereafter "physician-patients") and family caregivers of physician-patients view burden in care at the end of life. METHODS: Interviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts. RESULTS: Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care. CONCLUSION: Physician-Patients ' clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.

Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life.

CONTEXT: Cognitively impaired older adults frequently need surrogate decision-making near the end-of-life. It is unknown whether differences in the surrogate's relationship to the decedent are associated with different end-of-life treatment choices. OBJECTIVES: To describe differences in end-of-life care for community dwelling, cognitively impaired older adults when children and spouses are involved in decision-making. METHODS: Retrospective observational study. RESULTS: Among 742 community-dwelling adults with cognitive impairment (mild cognitive impairment or dementia) prior to death, children participated in end-of-life decisions for 615 patients (83%) and spouses participated in decisions for 258 patients (35%), with both children and spouses participating for 131 patients (18%). When controlling for demographic characteristics, decedents with only a spouse decision-maker were less likely to undergo a life-sustaining treatment than decedents with only children decision-makers (P < 0.05). There was no difference in the probability of in-hospital death or burdensome transfers across facilities across decedent-decision-maker relationships. Differences in rates of life-sustaining treatment were greater when we restricted to decedents with dementia. CONCLUSION: Decedents with cognitive impairment or dementia were less likely to receive life-sustaining treatments when spouses versus children were involved with end-of-life treatment decisions but were no less likely to experience other measures of potentially burdensome end-of-life care.

Religious Involvement, Depressive Symptoms, and Burden in Caregivers of Terminally Ill Patients.

Caring for terminally ill patients can be emotionally burdensome. Previous research has demonstrated that caregiving is associated with anxiety and depression. Research on caregivers of terminally ill patients is limited by retrospective studies with small samples. This study aimed to (1) describe religiosity, religious coping, and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer; (2) examine the relationship between religiosity and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer; (3) examine the relationship between religious coping and depressive symptoms in caregivers of persons with amyotrophic lateral sclerosis or advanced cancer. A descriptive exploratory design was used to analyze data from a larger 5-year National Institutes of Health-funded multisite randomized controlled trial (the TAILORED study). Nearly half of the caregivers screened positive for depressive symptoms, and negative religious coping was associated with higher depressive symptoms (P < .001). Spouse caregivers reported higher depressive symptoms than nonspouse caregivers. Many caregivers experienced depression, which was mitigated by positive religious coping.

Federal, state, and institutional regulations regarding a nursing student with a service animal.

Several universities are reporting increasing numbers of students using a service animal. Understanding the three types of assistance animals-service animal, therapy animal, and emotional support animal-will assist nursing educators in determining which animals are trained to provide a specific service to the student. Students with conditions as varied as diabetes, anxiety disorder, and seizures may benefit from a service animal. Reviewing the types of support these animals provide and federal, state, and local regulations related to service animal use will guide faculty members in preparing for a high quality learning experience for students who use a service animal. Query: Embase, CINAHL, PubMed.

Preparing for a student with a service animal.

This article offers guidance to nursing programs to assist in planning for a quality educational experience for a student with a service animal while ensuring patient safety and the continuation of efficient clinical operations. Nursing faculty should be aware of misperceptions about service animals in the workplace, address fears, concerns, and communicate plans for educating the student with the service animal to all faculty, staff and clinical personnel involved with the student. Examples are provided from experiences with multiple students using service dogs at two schools of nursing. Query: Embase, CINAHL, PubMed.

Nutritional support therapy after GLIM criteria may neglect the benefit of reducing infection complications compared with NRS2002: Reanalysis of a cohort study.

OBJECTIVES: The aim of this study is to validate the Global Leadership Initiative on Malnutrition (GLIM) criteria and determine the number of Nutritional Risk Screening 2002 (NRS2002)-positive patients who do not meet the GLIM, as well as examine whether these patients would benefit from nutritional support therapy. METHODS: A reanalysis of a published prospective observational study was performed. The subjects were rediagnosed per the NRS2002 and GLIM criteria. The prevalence of malnutrition was reported, and the difference in rate of infection complications and total complications between the nutritional support therapy and glucose-electrolyte cohorts was calculated. RESULTS: Among 1831 cases in the original database, 827 cases (45.2%) were NRS2002-positive. A total of 391 cases were identified by the GLIM criteria as malnourished (21.4%) and of these, subjects in the nutritional support therapy cohort had fewer infection complications than those in the glucose-electrolyte cohort (13.0% vs. 23.0%; P = 0.010). The remaining 436 patients were NRS2002 positive but GLIM negative (23.8%). The rate of infection was also significantly lower in the support cohort than in the nonsupport cohort (8.0% vs. 15.7%; P = 0.011). Nutritional support was proven o be a protective factor for infection complications in both GLIM-positive (odds ratio: 0.407; 95% confidence interval, 0.232-0.714; P = 0.002) and NRS2002-positive/GLIM-negative patients [odds ratio: 0.314; 95% confidence interval, 0.161-0.612; P = 0.001). CONCLUSIONS: The GLIM criteria have been validated, and are useful in identifying malnourished patients who may have fewer infection complications due to nutritional support therapy. However, the criteria neglected half of the patients identified by NRS2002, among whom nutritional support therapy also decreased the rate of infection complications.

What matters when doctors die: A qualitative study of family perspectives.

BACKGROUND: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. OBJECTIVES: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. DESIGN: Cross-sectional qualitative design. PARTICIPANTS: We conducted interviews with family members of deceased physicians. APPROACH: We analyzed the data using the constant comparison method to identify themes. KEY RESULTS: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system. CONCLUSIONS: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.

Scrambler therapy improves pain in neuromyelitis optica: A randomized controlled trial.

OBJECTIVE: To determine whether Scrambler therapy is an effective, acceptable, and feasible treatment of persistent central neuropathic pain in patients with neuromyelitis optica spectrum disorder (NMOSD) and to explore the effect of Scrambler therapy on co-occurring symptoms. METHODS: We conducted a randomized single-blind, sham-controlled trial in patients with NMOSD who have central neuropathic pain using Scrambler therapy for 10 consecutive weekdays. Pain severity, pain interference, anxiety, depression, and sleep disturbance were assessed at baseline, at the end of treatment, and at the 30- and 60-day follow-up. RESULTS: Twenty-two patients (11 per arm) were enrolled in and completed this trial. The median baseline numeric rating scale (NRS) pain score decreased from 5.0 to 1.5 after 10 days of treatment with Scrambler therapy, whereas the median NRS score did not significantly decrease in the sham arm. Depression was also reduced in the treatment arm, and anxiety was decreased in a subset of patients who responded to treatment. These symptoms were not affected in the sham arm. The safety profiles were similar between groups. CONCLUSIONS: Scrambler therapy is an effective, feasible, and safe intervention for central neuropathic pain in patients with NMOSD. Decreasing pain with Scrambler therapy may additionally improve depression and anxiety. CLINICALTRIALSGOV IDENTIFIER: NCT03452176. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that Scrambler therapy significantly reduces pain in patients with NMOSD and persistent central neuropathic pain.

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.