Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson's disease.

Objectives: To describe how patients with Parkinson's disease (PD) and care partners choose to share or withhold information from clinicians. Methods: This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients (n = 30) and care partners (n = 30) explored experiences communicating with neurology clinicians. Thematic analyses identified themes relevant to patient-care partner-clinician communication. Results: There were four themes relevant to sharing and/or withholding information from clinicians: (1) Suppressing Concerns During Visits, (2) Care Partner Awareness of Patients' Communication Barriers due to Cognitive Impairment, (3) Limited Sharing of Sensitive or Intimate Issues by Patients and Care Partners, and (4) Patient and Care Partner Suggestions to Overcome 'Holding Back'. Conclusion: Limitations to communication between patients, care partners, and clinicians should be acknowledged and recognized in routine Parkinson's disease care to foster accurate disclosure of unmet palliative care and other needs. Triadic communication strategies may help patients and care partners talk about unmet palliative care needs. Innovation: By recognizing that cognitive impairment and sensitive topics can be barriers, clinicians can adjust or adopt targeted communication strategies for identifying and discussing care needs.

Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

BACKGROUND: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. AIM: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease. DESIGN: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. SETTING/PARTICIPANTS: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites. RESULTS: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. CONCLUSIONS: Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

A rite of passage: The White Coat Ceremony for advanced practice registered nursing students.

ABSTRACT: Since 1993, when the Gold Foundation held its first White Coat Ceremony (WCC) to highlight humanism in medicine, many health professions have launched these ceremonies. In 2021, the University of Colorado College of Nursing hosted its first WCC. Postevent, a seven-question survey was sent to all faculty, staff, and student participants. The analytic question driving this program evaluation was as follows: "What is the significance of the White Coat Ceremony to APRN students?" Quantitative data from survey items were overwhelmingly positive; qualitative analysis of open-ended survey text reinforced the central WCC concept of Being/Becoming an APRN and elicited four themes: recognition, transition, symbolism, and connection. A detailed analysis of these themes is presented.

Perinatal Telehealth: Meeting Patients Where They Are.

INTRODUCTION: Prior to the coronavirus disease 2019 (COVID-19) pandemic, studies of innovative telehealth perinatal care models showed similar clinical outcomes and perceived quality of care between groups receiving a combination of virtual video and in-person visits. However, these studies included primarily White, English-speaking participants, excluding those who were economically disenfranchised or did not speak English. The purpose of this qualitative study was to describe perinatal patients' and providers' experiences with telehealth during and after the acute phase of the COVID-19 pandemic to inform future utilization of telehealth to drive the delivery of high-quality, accessible, and equitable perinatal care to diverse communities. METHODS: This descriptive qualitative study included a purposive sample of 14 patients and 17 providers who received or provided perinatal care via telehealth in either a certified nurse-midwifery practice or the nurse-family partnership care model between March 2020 and April 2022. Maximum variation sampling offered a diverse population based on race, ethnicity, and rurality. Researchers conducted 2 rounds of semistructured interviews with a focus on understanding social and geographic context. RESULTS: Six themes were identified through inductive analysis: (1) unexpected advantages of telehealth, (2) patient empowerment, (3) providers' fear of adverse outcomes, (4) concern for equitable care, (5) strategies to enhance the telehealth experience, and (6) strategies to address access to perinatal telehealth. Patients appreciated the increased ease and reduced cost of accessing visits, which led to fewer missed appointments. Health care providers saw great opportunity in telehealth but expressed concerns about accessibility for patients with language barriers or limited resources. DISCUSSION: This study provides insight into priorities for continued telehealth utilization focused on providing equitable access to perinatal care. Rather than returning to practices from before the COVID-19 pandemic formed from longstanding routines and perceived limitations, providers are encouraged to capitalize on the rapid innovations in telehealth to build a more effective, equitable, and patient-centered approach to perinatal care.

Best Practices for Telehealth in Nurse-Led Care Settings-A Qualitative Study.

The COVID-19 pandemic in the US prompted a sudden shift to telehealth in nurse-led care sites which provide services to diverse geolocations. Using a lens of intersectionality, this study characterizes provider and patient-perceived best and promising practices emerging from geographical variation. The aim of this study was to identify best practices of implementing telehealth in nurse-led care models in Colorado through patient and provider experiences of the sudden implementation of telehealth that can enhance health equity. In this exploratory/descriptive qualitative study, a purposive sample of 18 providers and 30 patients were interviewed using a guide informed by the RE-AIM implementation and evaluation framework to capture the contextual experiences related to the sudden shift to telehealth. Textual theme analysis and reflexive team strategies guided the interpretation. Four primary themes of perceived best practices were identified: using multiple modalities, tailoring triage and scheduling, cultivating safety through boundaries and expectations, and differentiating established versus new patient relationships. The findings suggest that telehealth is a flexible and powerful tool to enhance the delivery of equitable care through nurse-led care models within diverse communities such as the one represented in this study. Nurse leaders are positioned to participate in innovative research and create policies and protocols to ensure telehealth is a viable resource to deliver equitable, safe, and accessible high-quality healthcare.

Aphasia Associated With Acute on Chronic Kidney Failure in an Adolescent.

Acute and chronic kidney disease (CKD) have known neurological associations resulting from uremia, electrolyte disturbances, comorbidities such as hypertension, or other toxin accumulation. Reversible focal neurological deficits are relatively uncommon and poorly understood sequelae of kidney disease. Herein, we describe an unusual case of an adolescent male who developed acute aphasia during his initial presentation for acute kidney injury (AKI) superimposed on progressive CKD stage 5 associated with uremia and multiple electrolyte derangements. Symptoms resolved within one day of initiating continuous renal replacement therapy (CRRT) and gradual electrolyte and uremia correction. Such transient focal neurological deficits in AKI superimposed on progressive CKD in the pediatric population has not been widely reported.

A qualitative study of school nurses' moral distress related to COVID-19.

OBJECTIVE: To understand school nurses' perceptions and experiences of moral distress related to COVID-19 case management in the school systems. DESIGN: A descriptive qualitative study guided by Braun and Clarke's reflexive thematic analysis. SAMPLE: Twelve school nurses practicing in Colorado from December 2021 to January 2022. MEASUREMENTS: Semi-structured interviews about school nurses' experiences of COVID-19. Investigators utilized an iterative reflexive thematic analysis process engaging the participants' and researchers' subjective experiences. RESULTS: Four themes were created: (1) keeping kids and the community safe, (2) caught in the middle of the "tug of war" between health and politics, (3) distress amid an ocean of COVID-19 uncertainty, and (4) visibility as a bright spot shining through the COVID-19 cloud. CONCLUSIONS: Two research questions examined school nurses' experiences of moral distress and their role and scope of practice that affected their relationships in the educational and public health systems. The results of this study confirm the important role of school nurses and interprofessional case management in school environments in the fight against infectious diseases and pandemics. Building stronger relationships between school nurses and public health is imperative for future collaborative and cohesive public health responses to pandemics.

Immune Profile of Exosomes in African American Breast Cancer Patients Is Mediated by Kaiso/THBS1/CD47 Signaling.

African American (AA) women with breast cancer are more likely to have higher inflammation and a stronger overall immune response, which correlate with poorer outcomes. In this report, we applied the nanostring immune panel to identify differences in inflammatory and immune gene expression by race. We observed a higher expression of multiple cytokines in AA patients compared to EA patients, with high expression of CD47, TGFB1, and NFKB1 associated with the transcriptional repressor Kaiso. To investigate the mechanism associated with this expression pattern, we observed that Kaiso depletion results in decreased expression of CD47, and its ligand SIRPA. Furthermore, Kaiso appears to directly bind to the methylated sequences of the THBS1 promotor and repress gene expression. Similarly, Kaiso depletion attenuated tumor formation in athymic nude mice, and these Kaiso-depleted xenograft tissues showed significantly higher phagocytosis and increased infiltration of M1 macrophages. In vitro validation using MCF7 and THP1 macrophages treated with Kaiso-depleted exosomes showed a reduced expression of immune-related markers (CD47 and SIRPA) and macrophage polarization towards the M1 phenotype compared to MCF7 cells treated with exosomes isolated from high-Kaiso cells. Lastly, analysis of TCGA breast cancer patient data demonstrates that this gene signature is most prominent in the basal-like subtype, which is more frequently observed in AA breast cancer patients.

Incidence of asymptomatic SARS-CoV-2 infection in children undergoing elective otolaryngologic surgery throughout the COVID-19 pandemic.

Objective: Children infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) are less clinically affected than adults, with most cases presenting as asymptomatic or mildly symptomatic. However, true rates of asymptomatic SARS-CoV-2 infection in children remain unclear. We sought to examine rates of SARS-CoV-2 in asymptomatic children and the role of children in transmission. Methods: We performed a retrospective review of patients between 6 months and 17 years of age who underwent elective or semi-elective otolaryngologic surgery with physicians affiliated with Weill Cornell Medicine between May 15, 2020 and March 31, 2022. Patients were included if they received molecular assay testing for SARS-CoV-2 without SARS-CoV-2 symptoms within 5 days of scheduled surgery. SARS-CoV-2 infection status, exposure, clinical symptoms, demographic data, and insurance status were recorded. Results: 1047 patients met inclusion criteria. Thirteen positive cases (1.24%) were identified in the study population. Six cases occurred between December 2021 and February 2022 following the classification of the omicron variant as a variant of concern in November 2021. Five of the 13 cases occurred in children under 2 years of age. Seven patients were male, and five were female. Residences spanned all five boroughs of New York City and the surrounding metropolitan area. Conclusion: Throughout the pandemic, children have had a low rate of asymptomatic disease and likely pose a low risk of transmission of SARS-CoV-2 to the general population. Our results suggest that testing of asymptomatic children is a low-yield practice that is unlikely to influence rates of SARS-CoV-2 in the general population. Level of Evidence: 3.

Including Voices of Adolescents With Chronic Conditions in the Redesign of Children's Mental Health Systems: Implications for Resource Allocation.

INTRODUCTION: Adolescents with chronic conditions have disparate mental health outcomes. This study aimed to explore the perspectives of adolescents with chronic conditions on mental health system redesign to improve outcomes. METHOD: Within an interpretive phenomenological approach, semistructured interviews with 17 adolescents aged 10-20 years with chronic conditions were conducted. Purposive sampling and recruitment occurred at three ambulatory sites. Data were analyzed using inductive and deductive thematic analysis until information saturation was achieved. RESULTS: Four themes were identified: (1) Brushed off: I need to be heard, (2) I need someone I can really talk to and trust, (3) They need to reach out to us. Check in on us, and (4) the school nurse is for physical illness only. DISCUSSION: Mental health system redesign should be considered for adolescents with chronic conditions. The findings can inform future research to test innovative health care delivery models to reduce mental health disparities in this vulnerable population.

Adolescents with chronic conditions: Engagement with children's mental health systems during the Covid-19 pandemic.

PURPOSE: The Covid-19 pandemic contributed to adverse adolescent mental health outcomes globally. Adolescents with chronic conditions have four times the odds of self-harm than peers. Little evidence exists to guide pediatric nurses on how to engage this vulnerable population with mental health support as the pandemic continues. In adults with chronic conditions, positive health assets (health access literacy, health self-efficacy, and emotional well-being) are directly related to improved patient engagement. The objective of this study was to gain a deeper understanding of engagement with mental health supports in adolescents with chronic conditions to inform practice. DESIGN AND METHODS: Using mixed methods, we surveyed and interviewed adolescents with chronic conditions aged 10-20 years. Random sampling was applied to avoid bias. Valid and reliable scales were used to measure health access literacy, health self-efficacy, and emotional well-being. Textual data were collected using a semistructured interview guide. Integrated data analysis was conducted using structural equation models and interpretive phenomenology. RESULTS: One hundred fifty-four participants provided numerical data and 17 participants provided textual data (mean age 15.5 years; 56% female, 5.8% agender; 56% White; 16.9% Black or African American, 4.5% Asian; 51.9% Hispanic or Latinx; 23.4% LGBTQ+). The structural model was an acceptable fit for the data (comparative fit index [CFI] = 0.97, Tucker-Lewis index [TLI] = 0.95). Participants reported higher levels of health access literacy (M = 3.88, SD = 0.848) than health self-efficacy (M = 2.98, SD = 0.646), and engagement (M = 1.78, SD = 1.71). Health access literacy predicted emotional well-being (ß = .33, p < .001, 95% confidence interval [CI] [.20, .50]) and health self-efficacy (ß = .52, p < .001, 95% CI [0.42, .062]). Emotional well-being positively predicted health self-efficacy (ß = .21, p < .003, 90% CI [0.10, 0.033]). Health self-efficacy predicted engagement (ß = .20, p < .01, 90% CI [0.07, 0.034]). Participants reported not engaging until "it was really, really bad" citing fear, stigma, and lack of connectedness with providers as barriers. PRACTICE IMPLICATIONS: Regardless of health access literacy and health self-efficacy, adolescents with chronic conditions may not engage until crisis levels. Pediatric nurses can aim to engage with this vulnerable population proactively.

Ambiguous loss in family caregivers of loved ones with cancer, a synthesis of qualitative studies.

PURPOSE: The purpose of this synthesis of qualitative studies is to explore manifestations of ambiguous loss within the lived experiences of family caregivers (FCG) of loved ones with cancer. Grief and loss are familiar companions to the family caregivers of loved ones with cancer. Anticipatory loss, pre-loss grief, complicated grief, and bereavement loss have been studied in this caregiver population. It is unknown if family caregivers also experience ambiguous loss while caring for their loved ones along the uncertain landscape of the cancer illness and survivorship trajectory. METHODS: We conducted a four-step qualitative meta-synthesis of primary qualitative literature published in three databases between 2008 and 2021. Fourteen manuscripts were analyzed using a qualitative appraisal tool and interpreted through thematic synthesis and reciprocal translation. RESULTS: Five themes were derived, revealing FCGs appreciate change in their primary relationship with their loved ones with cancer, uncertainty reconciling losses, an existence that is static in time, living with paradox, and disenfranchised grief. The results of this synthesis of qualitative studies complement the descriptors of ambiguous loss presented in previous research. CONCLUSIONS: The results of this synthesis of qualitative studies complement the descriptors of ambiguous loss presented in previous theoretical and clinical research. By understanding ambiguous loss as a complex and normal human experience of cancer FCGs, oncology and palliative care healthcare providers can introduce interventions and therapeutics to facilitate caring-healing and resiliency. IMPLICATIONS FOR CANCER SURVIVORS: Untreated ambiguous loss can result in a decrease in wellbeing, loss of hope, and loss of meaning in life. It is imperative that cancer FCGs experiencing ambiguous loss are recognized and supported so that they may live well in the family disease of cancer.

Detection of 10 cases of ceftriaxone-resistant Neisseria gonorrhoeae in the United Kingdom, December 2021 to June 2022.

Between December 2021 and June 2022, 10 cases of ceftriaxone-resistant Neisseria gonorrhoeae (ST8123; n = 8) were detected in the United Kingdom, compared with nine cases during the previous 6 years. Most of these cases were associated with travel from the Asia-Pacific region; all were heterosexual people, with most in their 20s. Although all cases were successfully treated, not all partners of cases could be traced, and there is a risk of further transmission of ceftriaxone-resistant gonococcal infection within the UK.

The Relationship Between Practice Environment Variables and Nurse Manager Perceptions of Workplace Mistreatment to Identify Factors Amenable to Change.

OBJECTIVE: To examine the relationships between practice environment factors and nurse manager (NM) perceptions of workplace mistreatment (WPM). BACKGROUND: NMs have a unique perspective of business operations and care delivery and can offer insight into how WPM manifests in clinical settings at the leadership level. METHODS: Researchers used a cross-sectional correlational design using a nonexperimental causal technique. A convenience sample of 139 NMs completed a survey regarding their perceptions of organizational change, the practice environment, and WPM. RESULTS: NMs reported experiencing incivility (98%) and bullying (90%). Approximately 20% variance explained mistreatment by relationships with supervisors and budgeted resources ( F4,134 = 9.16, P = 0.000). CONCLUSIONS: Modifiable factors can be identified to prevent or reduce WPM.

Stories of the Heart: Illness Narratives of Veterans Living With Heart Failure.

Background: Illness narratives for veterans living with heart failure (HF) have been largely unexplored, yet HF is a significant and impactful illness affecting the lives of many veterans. Methods: This study used narrative inquiry to explore the domains of psychosocial adjustments using the model of adjustment to illness, including self-schema, world schema, and meaning. Results: Five illness narratives of veterans living with HF were cocreated and explored domains which were found across all the narratives explored in this study. Emergent themes included: uniqueness of the veteran experience and the social, historical, and cultural context of narrator and researcher. Conclusions: Veterans living with HF are a unique population who experience changes in their self-schema, world schema, and meaning through their illness experience. These findings have important implications for interdisciplinary health care research and clinical practice, providing important insight into how people live with chronic illness.

Student Interviews Exploring the Influence of the Coronavirus Pandemic on Graduate Nursing Education.

Introduction: Advanced practice nurses are needed to fill the primary healthcare gap in the United States. Advanced practice/graduate nursing students were profoundly affected by the coronavirus pandemic in ways that may impact their educational experience. Objective: The objective of this study was to explore the influence of the coronavirus pandemic on the educational experience of graduate nursing students. Methods: An exploratory descriptive qualitative study using semistructured video conferencing interviews of 11 graduate nursing students at one university in the United States was conducted during July 2020. Data were explored using theme analysis. Results: Four themes expressing the pandemic's impact on graduate student experience were identified: Alteration in human connections; Agility in action; Collaborative construction of change; and Metamorphosis emerging from disruption. The pandemic brought an alteration in how students connected with faculty, other students, and family. Many faculty and students responded with agility to the new mandates for social distancing. The students and faculty worked together to construct changes needed to provide the students with the required components of graduate education. These factors together created a metamorphosis in the functioning of the institution, breaking through hierarchical barriers in academia. Conclusion: The disruption in graduate nursing education due to the pandemic led to opportunities, including swift faculty innovation, a collaborative spirit between faculty and students, and new appreciation for connections with faculty and fellow students. Continuing intentional implementation of these opportunities would benefit students' experiences moving forward.

Emotional Wellbeing in Adolescents Living With Chronic Conditions: A Metasynthesis of the Qualitative Literature.

Adolescents living with chronic conditions (ALWCCs) are at a higher risk of suicide (odds ratio: 4.3) than their peers. No consensus exists in the scientific community on a definition or conceptual elements of emotional well-being in this vulnerable population, hindering informed interventional research. This study investigated the meaning of emotional well-being in ALWCCs. A systematic metasynthesis of the qualitative literature was performed and structured using ENTREQ guidelines for reporting qualitative metasynthesis. A final sample of 11 primary qualitative studies met inclusion criteria and was critically analyzed using a team-based thematic synthesis and reciprocal translation approach. The meaning of emotional well-being in ALWCCs is having positive relationships that ease loss, foster hope and resilience, and promote self-efficacy and self-actualization. The role of healthcare providers as a safe, stable nurturing relationship which promotes hope and positive body image emerges an area for future research. Spirituality as it relates to emotional well-being in this population is scarce in the qualitative literature and should be further explored.

Transition From Pediatric and Adolescent HIV Care to Adult HIV Care and the Patient-Provider Relationship: A Qualitative Metasynthesis.

ABSTRACT: Approximately 5 million adolescents (ages 15-24 years) living with HIV will transition to adult care in the next decade. Only half are engaged in care 12 months post-transition. This qualitative metasynthesis aimed to answer: What effect did the patient-provider relationship (PPR) have on adolescent living with HIV transition? What strategies were suggested to develop trusting relationships to promote engagement and retention in care? Primary qualitative studies from PubMed, CINAHL, and EBSCO (January 2008 to December 2019) were identified. Data were analyzed using team-based thematic synthesis techniques and international standards. Fourteen articles with 478 participants from eight countries were included. Four themes emerged: the familial nature of the PPR, stigma as a bond and barrier, the provider knowing the patient and getting to know new providers, and recommendations supporting transition. The PPR is integral. Collaborative strategies used to build new relationships will support autonomy, decrease stigma, and facilitate trust.

Adolescents' perceptions of barriers and facilitators to engaging in mental health treatment: A qualitative meta-synthesis.

PROBLEM: One in seven children, aged 3-17, have a mental health diagnosis with suicide being the second leading cause of death in the United States in persons aged 10-24. Adolescents are at high risk for mental health disorders, substance use, and risky behaviors, yet most adolescents never receive treatment. Research is needed to answer the question, "What are adolescents' perceived barriers and facilitators to engaging in mental health treatment?" METHODS: A four-step qualitative meta-synthesis design included: A structured research question and search strategy, data immersion through quality appraisal, thematic synthesis of primary research studies, and reciprocal translation of derived themes. FINDINGS: Eight studies met inclusion criteria. Autonomy was the primary theme that emerged. Meta-synthesis produced five subthemes: (a) choice as integral to engagement, (b) stigma as barrier to engagement, (c) quality of the therapeutic relationship as integral to engagement, (d) systemic influences as both barrier and facilitator to engagement, and (e) mental health literacy as crucial factor in decision to engage. CONCLUSION: Adolescents require autonomy to engage in mental health treatment. Improving treatment engagement in adolescents requires interventions that address their ability to be autonomous.