Nurse Sensemaking for Responding to Patient and Family Safety Concerns.

BACKGROUND: Hospitals need to prevent, respond to, and learn from safety risks and events perceived by patients and families, who in turn rely on nurses to respond to and report their safety concerns. OBJECTIVES: The aim of the study was to describe the process by which bedside nurses evaluate and determine the appropriate response to safety concerns expressed by patients or their families. METHODS: A qualitative design was employed. We recruited inpatient bedside nurses in an 811-bed Midwest academic medical center. Nurses provided demographic information and participated in semistructured interviews designed to elicit narratives related to evaluation and response to patient- or family-expressed safety concerns. Data analysis and interpretation were guided by grounded theory. RESULTS: We enrolled 25 nurses representing 22 units. Based on these nurses' experiences, we developed a grounded theory explaining how nurses evaluate a patient or family safety concern. Nurses make sense of the patient's or family's safety concern in order to take action. Achieving this goal requires evaluation of the meaningfulness and reasonableness of the concern, as well as the potential effect of the concern on the patient. Based on this nursing evaluation, nurses respond in ways designed to (a) manage emotions, (b) immediately resolve concerns, (c) involve other team members, and (d) address fear or uncertain grounding in reality. Nurses reported routinely handling safety concerns at the bedside without use of incident reporting. DISCUSSION: Safety requires an interpersonal and evaluative nursing process with actions responsive to patient and family concerns. Safety interventions designed to be used by nurses should be developed with the dynamic, cognitive, sensemaking nature of nurses' routine safety work in mind. Being sensitive to the vulnerability of patients, respecting patient and family input, and understanding the consequences of dismissing patient and family safety concerns are critical to making sense of the situation and taking appropriate action to maintain safety. Measuring patient safety or planning improvement based on patient or family expression of safety concerns would be a difficult undertaking using only standard approaches. A more complex approach incorporating direct patient engagement in data collection is necessary to gain a complete safety picture.

A grounded theory of creating space for open safety communication between hospitalized patients and nurses.

BACKGROUND: There is evidence that fear of negative nurse response may prevent hospitalized patients from sharing safety concerns, adversely affecting patient safety. PURPOSE: The purpose of the present study was to describe the process by which bedside nurses recognize and respond to safety concerns expressed by patients or their families. METHODS: Twenty-five bedside nurses from 30 maternal-child, intensive, medical-surgical, and psychiatric inpatient units within an academic medical center participated in semi-structured interviews. Data were analyzed using grounded theory. FINDINGS: Nurses reported creating space for open safety communication to foster trust and maintain patient safety and sense of security. Nurses anticipated safety concerns, invited safety discussion, were accessible, recognized insecurity, reacted in a trustworthy way, shared a plan, and followed up with patient and family. DISCUSSION: This process involves multiple interacting components, yet was remarkably consistent across acute care settings, despite differences in nurses, patient populations, and unit cultures.

Current status and future directions of U.S. genomic nursing health care policy.

BACKGROUND: As genomic science moves beyond government-academic collaborations into routine healthcare operations, nursing's holistic philosophy and evidence-based practice approach positions nurses as leaders to advance genomics and precision health care in routine patient care. PURPOSE: To examine the status of and identify gaps for U.S. genomic nursing health care policy and precision health clinical practice implementation. METHODS: We conducted a scoping review and policy priorities analysis to clarify key genomic policy concepts and definitions, and to examine trends and utilization of health care quality benchmarking used in precision health. FINDINGS: Genomic nursing health care policy is an emerging area. Educating and training the nursing workforce to achieve full dissemination and integration of precision health into clinical practice remains an ongoing challenge. Use of health care quality measurement principles and federal benchmarking performance evaluation criteria for precision health implementation are not developed. DISCUSSION: Nine recommendations were formed with calls to action across nursing practice workforce and education, nursing research, and health care policy arenas. CONCLUSIONS: To advance genomic nursing health care policy, it is imperative to develop genomic performance measurement tools for clinicians, purchasers, regulators and policymakers and to adequately prepare the nursing workforce.

An integrated model of multimorbidity and symptom science.

BACKGROUND: Prevalence and complexity of persons with multiple chronic conditions (MCC), also known as multimorbidity, are shifting clinical practice from a single disease focus to one considering MCC and symptoms. Although symptoms are intricately bound to concepts inherent in MCC science, symptoms are largely ignored in multimorbidity research and literature. PURPOSE: Introduce an Integrated Model of Multimorbidity and Symptom Science. METHODS: Critical integrative review and synthesis process. FINDINGS: The model comprises three primary domains: 1. Contributing/ Risk Factors; 2. Symptom/Disease/Treatment Interactions; and 3. Patient Outcomes. DISCUSSION: The model highlights the multilevel nature of contributing factors and the recursive interactions among multiple etiologies, conditions, symptoms, therapies, and outcomes.

Advocacy and actions to address disparities in access to genomic health care: A report on a National Academies workshop.

BACKGROUND: In the United States, access to genomic risk assessment, testing, and follow up care is most easily obtained by those who have sufficient financial, educational, and social resources. Multiple barriers limit the ability of populations without those resources to benefit from health care that integrates genomics in assessment of disease risk, diagnosis, and targeted treatment. PURPOSE: To summarize barriers and potential actions to reduce genomic health care disparities. METHOD: Summarize authors' views on discussions at a workshop hosted by the National Academy of Medicine. DISCUSSION: Barriers include access to health care providers that utilize genomics, genetic literacy of providers and patients, and absence of evidence of gene variants importance in ancestrally diverse underserved populations. CONCLUSION: Engagement between underserved communities, health care providers, and policy makers is an essential component to raise awareness and seek solutions to barriers in access to genomic health care for all populations.

Omics research ethics considerations.

BACKGROUND: Pending revisions to the Common Rule include topics consistent with respect for persons, justice, and beneficence for research subjects in studies using omics technologies and are relevant to omics research. PURPOSE: Synthesize trends in bioethics, precision health, and omics nursing science for novice and experienced nursing scholars from which to consider bioethics questions. METHODS: Review topics addressed in the National Institute of Nursing Research (NINR) strategic plan, Common Rule pending revisions, and publications regarding human subjects protection policies. DISCUSSION: Omics research involves decisions regarding understandable informed consent, broad consent, data sharing, trust, equal benefit, equal access, societal variables, privacy, data security, and return of findings to participants. CONCLUSION: Principles of respect for persons, justice, and beneficence as articulated in the Belmont report and reflected in the American Nurses Association (ANA) Code of Ethics provide guidance for human subjects protection procedures to advance omics and nursing science.

Implementation science, genomic precision medicine, and improved health: A new path forward?

Implementation of genomic discoveries into health care optimally includes evaluation of outcomes for recipients of care, providers, payers, and health care systems. However, the influence of specific aspects of the implementation process on observed outcomes may be missed if assessment of implementation success is not built into the implementation design. The intersection of implementation science with genomics may provide new insights on how to maximize the benefits of emerging genomic technologies in health care. In this summary, members of the Roundtable on Genomics and Precision Health, formerly the Roundtable on Translating Genomic-Based Research for Health, of the National Academies of Sciences, Engineering, and Medicine and the American Academy of Nursing explore challenges and opportunities for nurses to participate in implementing genomic discoveries into their practice informed by the principles of implementation science. Implementation requires collaboration across disciplines. Nurses can take leadership roles in engaging key stakeholders in health care organizations, assuring that communications regarding implementation are consistent with genomic literacy for each group of stakeholders, and planning for evaluation of data to assess how each component of the implementation process affected the overall outcome for health care.

Five-Year Bibliometric Review of Genomic Nursing Science Research.

PURPOSE: This bibliometric review profiles the focus, dissemination, and impact of genomic nursing science articles from 2010 to 2014. DESIGN: Data-based genomic nursing articles by nursing authors and articles by non-nurse principal investigators funded by the National Institute of Nursing Research were categorized into the Genomic Nursing Science Blueprint nursing areas. METHODS: Bibliometric content analysis was used. FINDINGS: A total of 197 articles met the inclusion criteria. Of these, 60.3% were on biologic plausibility, 12.1% on client self-management, 11.1% on decision making or decision support, 8.1% on family, and 4.0% on communication, with the remaining 4.0% of articles focused on other topics. Few (11.6%) addressed healthcare disparities in the study purpose. Thirty-four references (17.2%) were cited 10 or more times. CONCLUSIONS: Research-based genomic nursing science articles are in the discovery phase of inquiry. All topics were investigated in more than one country. Healthcare disparities were addressed in few studies. Research findings from interdisciplinary teams were disseminated beyond nursing audiences, with findings addressing biologic discovery, decision making or support, and family being cited most frequently. Gaps in the reviewed articles included cross-cutting themes, ethics, and clinical utility. Interdisciplinary research is needed to document clinical and system outcomes of genomic nursing science implementation in health care. CLINICAL RELEVANCE: Although the review identifies areas that are encountered in clinical practice, relevance to practice will depend on evaluation of findings and subsequent development of clinical guidelines.

Stressors in Teens with Type 1 Diabetes and Their Parents: Immediate and Long-Term Implications for Transition to Self-Management.

UNLABELLED: Teens with Type 1 diabetes and their parents experience every day and illness-related stress; however, understanding of how these stressors relate to the transition to adulthood is limited. The purpose of this study was to identify stressors of teens with Type 1 diabetes (T1DM) and their parents related to the impending transition to adulthood. DESIGN AND METHODS: This study used open-ended questions to identify every day and illness-related stressors among 15 teens with T1DM and 25 parents seen in one pediatric diabetes clinic. Qualitative descriptive analysis identified themes in interview transcripts. RESULTS: The primary teen stressor related to impending transition centered on ineffective self-management, often when they were taking over responsibility for T1DM management. Parents' concerns included immediate and long-term negative outcomes of teen self-management as well as financial resources and health insurance for the teen. Teens and parents both expressed specific concerns about outcomes and prevention of nocturnal hypoglycemia, and identified uncertainties related to teen health and diabetes-focused health care when no longer living in the parent's home. CONCLUSIONS: Teens with Type 1 diabetes and their parents understand that independent teen self-management is a component of transition to adulthood, but worry about teen self-management outcomes. Concerns specific to health care transition included health insurance, T1DM resources, and teens' abilities to handle new situations. PRACTICE IMPLICATIONS: Identifying current and future self-management concerns of individuals and families can facilitate targeted education and interventions to support successful transition to adulthood.

Advanced nursing practice and research contributions to precision medicine.

BACKGROUND: Genomic discoveries in the era of precision medicine hold the promise for tailoring healthcare, symptom management, and research efforts including targeting rare and common diseases through the identification and implementation of genomic-based risk assessment, treatment, and management. However, the translation of these discoveries into tangible benefits for the health of individuals, families, and the public is evolving. PURPOSE: In this article, members of the Genetics Expert Panel identify opportunities for action to increase advanced practice nursing and research contributions toward improving genomic health for all individuals and populations. DISCUSSION: Identified opportunities are within the areas of: bolstering genomic focused advanced practice registered nurse practice, research and education efforts; deriving new knowledge about disease biology, risk assessment, treatment efficacy, drug safety and self-management; improving resources and systems that combine genomic information with other healthcare data; and advocating for patient and family benefits and equitable access to genomic healthcare resources.

Increasing participation in genomic research and biobanking through community-based capacity building.

Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building--a framework for research that includes collaborations and on-going engagement--can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers' commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation.

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

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

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

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

Patient Voices in Hospital Safety during the COVID-19 Pandemic.

Hospitalized patients and their families may be reluctant to express safety concerns. We aimed to describe safety and quality concerns experienced by hospitalized patients and families and factors and outcomes surrounding decisions about voicing concerns, including those related to the COVID-19 pandemic. We conducted semi-structured interviews with 19 discharged inpatients or family members in a qualitative descriptive design. Some participants reported concern about staff competency or knowledge, communication and coordination, potential treatment errors, or care environment. Factors influencing feeling safe included healthcare team member characteristics, communication and coordination, and safe care expectations. Reasoning for voicing concerns often included personal characteristics. Reasons for not voicing concerns included feeling no action was needed or the concern was low priority. Outcomes for voicing a concern were categorized as resolved, disregarded, and unknown. These findings support the vital importance of open safety communication and trustworthy response to patients and family members who voice concerns.

Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.

BACKGROUND: Genomic research is challenging the tradition of informed consent. Genomic researchers in the USA, Canada and parts of Europe are encouraged to use informed consent to address the prospect of disclosing individual research results (IRRs) to study participants. In the USA, no national policy exists to direct this use of informed consent, and it is unclear how local institutional review boards (IRBs) may want researchers to respond. OBJECTIVE AND METHODS: To explore publicly accessible IRB websites for guidance in this area, using summative content analysis. FINDINGS: Three types of research results were addressed in 45 informed consent templates and instructions from 20 IRBs based at centres conducting genomic research: (1) IRRs in general, (2) incidental findings (IFs) and (3) a broad and unspecified category of 'significant new findings' (SNFs). IRRs were more frequently referenced than IFs or SNFs. Most documents stated that access to IRRs would not be an option for research participants. These non-disclosure statements were found to coexist in some documents with statements that SNFs would be disclosed to participants if related to their willingness to participate in research. The median readability of template language on IRRs, IFs and SNFs exceeded a ninth-grade level. CONCLUSION: IRB guidance may downplay the possibility of IFs and contain conflicting messages on IRR non-disclosure and SNF disclosure. IRBs may need to clarify why separate IRR and SNF language should appear in the same consent document. The extent of these issues, nationally and internationally, needs to be determined.

Couples' coping in prodromal Huntington disease: a mixed methods study.

Huntington disease (HD) includes a prodromal phase with behavioral, cognitive, and motor function decline occurring up to 15 years prior to diagnosis. This study used mixed methods to examine how people in the prodromal phase and their companions coped with noticed changes. Twenty-three couples completed a semi-structured interview and Brief COPE. Participants with prodromal HD used acceptance, emotional support, and planning most frequently; companions used acceptance, planning, and active coping. Least frequently used coping strategies for each were denial, behavioral disengagement, and substance use. Qualitative interviews revealed coping strategies not included in the Brief COPE. Participants with prodromal HD used prescription medications, coping as a couple, hope, and self-monitoring; companions used hope and helping their partners. Many of the coping procedures were rated as effective, especially when changes were not severe. Couples may benefit from counseling that emphasizes using active coping strategies for changes that can be compensated for and acceptance for changes that cannot in prodromal HD. Findings from this study may be helpful for counseling patients and significant others facing other neurodegenerative conditions with prodromal or early phases, such as Alzheimer disease and Parkinson disease.

Family carer personal concerns in Huntington disease.

AIM: To examine and compare the personal concerns of family members providing care for people with Huntington disease in the United Kingdom and the United States. BACKGROUND: Family carers of people with Huntington disease may feel burdened by caregiving responsibilities and concerned about illness risk for relatives. METHOD: A mailed personal concerns survey was completed by 108 United Kingdom and 119 United States adult family carers of people with Huntington disease in 2006 and 2007. Survey responses included frequency and intensity of concerns, and narrative comments. Data were analysed using descriptive statistics of the products of frequency and intensity of reaction scores to identify a personal concerns index for items with the twelve highest combined scores. Factor analysis identified three factors, which were compared between respondents by factor and items within factors using t tests mean frequency by intensity scores. Narrative comments were thematically analysed. RESULTS: Three main factors were labelled impact of role change, sense of isolation and concerns for children. Within the role change factor, United States family caregivers had significantly higher concerns about family finances and United Kingdom carers expressed significantly greater personal sadness. Both groups expressed concern about isolation from family. Although family carers in both countries expressed concern about their children, those of United States caregivers were significantly higher. CONCLUSION: Further studies are required to identify benefits of support services that are specific to carer concerns and consistent with national healthcare systems.