The Helicobacter pylori methylome is acid-responsive due to regulation by the two-component system ArsRS and the type I DNA methyltransferase HsdM1 (HP0463).

In addition to its role in genome protection, DNA methylation can regulate gene expression. In this study, we characterized the impact of acidity, phase variation, and the ArsRS TCS on the expression of the Type I m6A DNA methyltransferase HsdM1 (HP0463) of Helicobacter pylori 26695 and their subsequent effects on the methylome. Transcription of hsdM1 increases at least fourfold in the absence of the sensory histidine kinase ArsS, the major acid-sensing protein of H. pylori. hsdM1 exists in the phase-variable operon hsdR1-hsdM1. Phase-locking hsdR1 (HP0464), the restriction endonuclease gene, has significant impacts on the transcription of hsdM1. To determine the impacts of methyltransferase transcription patterns on the methylome, we conducted methylome sequencing on samples cultured at pH 7 or pH 5. We found differentially methylated motifs between these growth conditions and that deletions of arsS and/or hsdM1 interfere with the epigenetic acid response. Deletion of arsS leads to altered activity of HsdM1 and multiple other methyltransferases under both pH conditions indicating that the ArsRS TCS, in addition to direct effects on regulon transcription during acid acclimation, may also indirectly impact gene expression via regulation of the methylome. We determined the target motif of HsdM1 (HP0463) to be the complementary bipartite sequence pair 5'-TCAm6AVN6TGY-3' and 3'-AGTN6GAm6ACA-5'. This complex regulation of DNA methyltransferases, and thus differential methylation patterns, may have implications for the decades-long persistent infection by H. pylori. IMPORTANCE This study expands the possibilities for complex, epigenomic regulation in Helicobacter pylori. We demonstrate that the H. pylori methylome is plastic and acid sensitive via the two-component system ArsRS and the DNA methyltransferase HsdM1. The control of a methyltransferase by ArsRS may allow for a layered response to changing acidity. Likely, an early response whereby ArsR~P affects regulon expression, including the methyltransferase hsdM1. Then, a somewhat later effect as the altered methylome, due to altered HsdM1 expression, subsequently alters the expression of other genes involved in acclimation. The intermediate methylation of certain motifs supports the hypothesis that methyltransferases play a regulatory role. Untangling this additional web of regulation could play a key role in understanding H. pylori colonization and persistence.

Spirituality in Adolescents and Young Adults With Cancer: An Evolutionary Concept Analysis.

Background: Despite an increased focus on the importance of spirituality to human health, including adolescent health outcomes there remains an absence of evidence-based programs to address the spiritual needs of patients and families. A critical barrier is the absence of a clear conceptual understanding and operational definitions of spirituality for adolescents/young adults (AYAs) with cancer. The purposes of this concept analysis were to (a) clarify the concept of spirituality in the context of the AYAs' cancer experience and (b) generate a definition based on a review of the literature examining spiritual development and the role of spirituality in AYAs' health and cancer treatment. Method: We used Roger's evolutionary concept analysis method to identify antecedents, attributes, and consequences of spirituality in the context of AYAs' cancer using thematic analysis and included identification of case exemplars. Results: Of the 86 articles identified, 21 met our inclusion criteria. Analysis revealed four attributes of spirituality in AYAs with cancer: meaning and purpose, connectedness, life-long universal experience, and independent of or related to religion and faith traditions. Identified antecedents included the presence of spiritual resources, chronic illness, belief, or wonder about a higher power, and existential questions. Identified consequences included hope, meaning, feelings of peace, and enhanced well-being and illness acceptance. Based on the findings, we generated a definition of spirituality in AYAs with cancer. Discussion: Findings inform the development of measures and spiritual care interventions specific to AYAs with cancer. An important limitation to address in future research is the absence of AYAs' first-person accounts of their own spirituality.

Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer.

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.

E-cigarette sharing behavior among college students: An exploratory study.

INTRODUCTION: The purpose of this study was to explore sharing behavior among college students who use e-cigarettes. METHODS: A convenience sample of current e-cigarette users answered questionnaire items regarding sharing behavior (e.g., the number of people that have shared e-cigarettes, the settings that sharing takes place, reasons for sharing). RESULTS: Of the 121 participants, 24% shared e-cigarettes every day and 76% shared some days. The most common setting (91%) for sharing was at social gatherings, and participants shared most often (52%) with one or two people, which happened most often (99%) with friends. The top reason (80%) for sharing e-cigarettes was to feel the effects of nicotine. CONCLUSIONS: The finds support the need to address sharing behavior in youth e-cigarette use and the need for more stringent e-cigarette policies and cessation resources.

Development and Psychometric Evaluation of the Connectedness with Health Care Providers Scale for Adolescents and Young Adults with Cancer.

Purpose: Purposes of this study were to (1) develop an instrument of connectedness with health care providers (HCPs) for adolescents and young adults (AYAs) with cancer (ages 13 to 21 years); (2) evaluate the content validity of the instrument through expert panels; (3) assess the dimensionality of the instrument; (4) evaluate the internal consistency reliability of the instrument; and (5) evaluate the convergent and discriminant validity of the instrument through hypothesis testing. Methods: The Connectedness with HCPs Scale (C-HCPS) was developed and evaluated in two phases. Phase I involved generating items, having two expert panels (AYAs and clinicians; n = 13) evaluate the items for content validity, and pretesting the instrument before pilot testing (n = 6). In phase II, the psychometric properties of the instrument (dimensionality, internal consistency reliability, and convergent/discriminant validity) were evaluated (n = 101). Results: The initial exploratory factor analysis revealed that the items separated into two separate instruments. In addition to the C-HCPS, a Disconnectedness with HCPs Scale (D-HCPS) was revealed. The C-HCPS contains 35 items and the D-HCPS contains 11 items. Exploratory factor analysis suggested a five-factor solution for the C-HCPS and a two-factor solution for the D-HCPS. Internal consistency reliability of the C-HCPS and D-HCPS was 0.964 and 0.881, respectively. Good evidence of convergent and discriminant validity was demonstrated through hypothesis testing. Conclusion: Findings indicate that the C-HCPS and D-HCPS are both reliable instruments with good evidence of convergent and discriminant validity. Further exploration of these instruments using confirmatory factor analysis in a larger sample is needed.

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

BACKGROUND: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs. OBJECTIVE: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment. METHODS: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method. RESULTS: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination. CONCLUSION: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority. IMPLICATIONS FOR PRACTICE: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.

Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer.

This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.

Academic-Practice Partnerships: A Win-Win.

Partnerships between academia and practice can lead to improved patient care and health system innovations. Nurse educators in both academia and practice are positioned to facilitate opportunities for students and practicing nurses to be involved in evidence-based practice (EBP) care initiatives involving academic-health care partners in clinical and/or community-based systems. Best practices in collaborative partnerships have demonstrated the significance of their far-reaching impact on patients, students, direct care nurses, and health systems. Translation of EBP knowledge to practice transforms patient outcomes and empowers nurses to address the complexity of health care systems. This article describes the process and outcomes of an academic-practice partnership facilitated by nurse educators in both academic and practice settings. The impact of the adoption of EBP projects on clinical practice, students, and practicing nurses is described. National and international implications for academic- practice partnerships are discussed. [J Contin Educ Nurs. 2019;50(6):282-288.].

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.

A Connectedness Primer for Healthcare Providers: Adolescents/Young Adult Cancer Survivors' Perspectives on Behaviors That Foster Connectedness During Cancer Treatment and the Resulting Positive Outcomes.

PURPOSE: Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this article is to describe the key behaviors of HCPs AYA perceive as essential to fostering connectedness with them and the outcomes AYA experience from such connectedness. METHODS: The sample for this empirical phenomenological study was nine AYA cancer survivors (aged 20-23 years) who were diagnosed in adolescence. In-person individual interviews were conducted using a broad, data-generating question and analyzed using an adapted Colaizzi's method. RESULTS: The key behaviors of HCPs AYA perceive as essential to fostering connectedness include (1) exhibiting characteristics of knowing how to connect; (2) being watchful and attentive to AYA needs; (3) displaying a willingness to foster the relationship; (4) using humor; and (5) conveying respect, support, and caring. Outcomes of connectedness for AYA include a sense of being cared about, understood, and respected as unique individuals. In addition, AYA experience a sense of confidence/comfort in expressing themselves to HCPs, anticipation of interacting with HCPs in the future, a sense of gratitude for HCPs, and enhanced well-being. CONCLUSION: Findings highlight the specific behaviors HCPs can use to foster connectedness with AYA and the outcomes AYA experience from connectedness. Improving HCPs' ability to connect with AYA and maintain connectedness is essential to identifying and addressing the psychosocial needs of AYA. AYA-HCP connectedness may help reduce the psychosocial distress AYA experience during and after treatment.

Connecting with healthcare providers at diagnosis: adolescent/young adult cancer survivors' perspectives.

Adolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs' cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs' experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors' experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs' ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer.

BACKGROUND: Empirically derived and tested models are necessary to develop effective, holistic interventions to improve positive health outcomes in adolescents and young adults (AYA) with cancer, yet few exist. This article is the second of 2 articles reporting on evaluation of the Resilience in Illness Model (RIM) as a predictive model to guide positive health research and practice. OBJECTIVE: The aim of this study was to report the confirmatory model evaluation of the RIM. METHODS: A confirmatory evaluation of RIM was done using baseline data from a sample of 113 AYA aged 11 to 24 years who were undergoing hematopoietic stem cell transplant and enrolled in a randomized controlled trial of a behavioral intervention to enhance resilience. Data were analyzed using latent variable structural equation modeling. RESULTS: Goodness-of-fit indices supported RIM as a confirmed model that accounted for large amounts of variance in the outcomes of self-transcendence (62%) and resilience (72%), and in 3 of 5 mediators, specifically social integration (74%), courageous coping (80%), and hope-derived meaning (87%), as well as small to moderate amounts of variance in the remaining mediators of defensive coping (1%) and family environment (35%). CONCLUSIONS: Findings establish the RIM as a plausible predictive framework for explaining ways AYA with cancer transcend their illness and achieve resilience resolution and for guiding intervention studies in this population. Additional research is needed to explore RIM's transferability based on stage of illness, other chronic diseases, and cultural diversity. IMPLICATIONS FOR PRACTICE: Results support the RIM as an appropriate guide for developing and evaluating interventions to foster positive adjustment in AYA with cancer.

Psychosocial Interventions for Adolescents and Young Adults with Cancer.

OBJECTIVES: To summarize and evaluate the studies published since 2007 on psychosocial interventions designed for adolescents and young adults (AYA) with cancer. DATA SOURCES: PubMed, Ovid, and PsycINFO. CONCLUSION: Our review confirms that the development and evaluation of psychosocial interventions for AYA is still in its infancy. Only five studies were identified and these generally had small samples and limited results. IMPLICATIONS FOR NURSING PRACTICE: It is important for nurses to assess the needs of AYA. Incorporating creative ways for AYA to express their needs and self-reflect seems to be critically important and may help AYA cope positively with the cancer experience.

Advances in defining, conceptualizing, and measuring quality of life in pediatric patients with cancer.

PURPOSE/OBJECTIVES: To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Society's State-of-the-Knowledge Conference on QOL. DATA SOURCES: Published research, clinical papers, and hospital policies. DATA SYNTHESIS: QOL ratings from children and adolescents are being solicited increasingly in research and clinical assessments during treatment and survivorship using various methods but are not solicited from terminally ill patients; qualitatively induced models of pediatric cancer-related QOL now are being tested using quantitative methods. CONCLUSIONS: Children aged five years and older are able to report their cancer-related QOL; reliable and valid QOL instruments exist for all phases of treatment except end of life. IMPLICATIONS FOR NURSING: Nurses can involve children and adolescents in rating their QOL for research and clinical purposes and can apply theory-based QOL models to direct care.

Information needs of adolescents with cancer.

Adolescents with cancer (AWC) have poorer treatment outcomes as well as higher incidence and mortality rates than do younger children, and they face additional challenges related to normal developmental issues of adolescence. Although research has shown that information on the cancer experience improves outcomes by decreasing uncertainty and increasing perceived support, little is known about the types of information AWC need and want. This study describes how AWC rate the importance of specific cancer-related information, analyzes gender and age group differences, and compares 2 different time-since-diagnosis groups of AWC. The sample consisted of adolescents with newly diagnosed cancer (n = 74) and those 1 to 3 years from diagnosis (n = 39). The Information Preferences of Adolescents (IPA) Scale was used to measure the adolescents' information needs. Both samples of AWC rated the need for information as high. There were no significant differences by age, but females had significantly higher total scores for both groups and for many item means in the newly diagnosed group. Qualitative analysis of the additional write-in items generated 4 themes: treatment/side effects, uncertainty, social issues, and personal/emotional issues.

The adolescent/young adult experience.

Adolescents and young adults with cancer (AYA) have strikingly poorer outcomes when compared to younger or older patients. Contributing reasons include low rates of enrollment in clinical trials and the "invisibility" of the AYA perspectives in research reports. We recommend a shift in research perspectives away from function-based studies that focus on morbidity and mortality outcomes to meaning-based models that will very likely rely upon qualitative methods and findings as the basis for developing psychosocial interventions that are sensitive to the AYA cancer experience. In addition, research on positive health concepts such as hope, spirituality, and positive coping are recommended as a way to learn about the effective strategies used by AYA to adjust to the cancer experience.