Search

In goals of care conversations and through the care trajectory, to avoid insensitive or discriminatory care, it is vital clinicians recognize lesbian, gay, bisexual, transgender, queer+ patients' values and wishes. In clinical settings, implicit bias operating within unconscious awareness may challenge the commitment to equitable care, negatively affecting patient outcomes. In this composite case, during a conversation with a social worker/nurse team, a cisgender woman repeatedly expressed her wishes for her female partner to be her decision maker instead of her biological family. The conversation stalled during the patient's attempts to identify her partner as her most valued and trusted person. Interviewer follow-up responses based on motivational interviewing techniques, which do not include strategies for lesbian, gay, bisexual, transgender, queer+ interactions, inaccurately reflected the patient's needs. Two ethical issues emerged, (1) autonomy and (2) beneficence. Clinicians should approach all patients using nongendered language, and allow patients to self-identify and decide which people are in their support system. Lack of inclusivity training has significant potential to affect the patient experience and decrease clinician/patient trust. Clinicians should not assume the decision maker is a cisgender, heterosexual partner or a biological family member. When patients speak about their partners, it is imperative clinicians use the patient's language and not avoid or redirect responses., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Abstract: With recent advances in understanding racial, socioeconomic, and mental health issues in medicine and their relation to policy and legislation, medical professionals are increasingly involved in local and national advocacy efforts. At the frontlines of these initiatives are medical students who, in addition to completing required coursework and clinical training, devote themselves to serving patients through civic participation. The burgeoning evidence concerning health care disparities and inequity, along with greater awareness of racial and socioeconomic discrimination, have made advocacy an essential aspect of many students' medical training. Every year, thousands of medical students join national medical advocacy organizations, in addition to regional, state, and local groups. Despite the rich history of medical student involvement in advocacy, there remains much speculation and skepticism about the practice as an essential component of the medical profession. From early initiatives pushing for national health insurance after World War II to encouraging antidiscrimination policies and practices, medical students have been collectively working to create change for themselves and their patients. Through efforts such as banning smoking on airplanes, creating safe syringe programs, and protesting against police brutality, many medical students work tirelessly in advocacy despite minimal educational support or guidance about the advocacy process. Given that medical student advocacy continues to grow and has shown measurable successes in the past, the authors believe that these efforts should be rewarded and expanded upon. The authors examine historical examples of medical student advocacy to suggest ways in which advocacy can be integrated into core medical school curricula and activities. They call attention to opportunities to support students' development of knowledge and skills to facilitate legislative change, expansion of interprofessional collaborations and credit, and curricular updates to promote social and health equity., (Copyright © 2023 the Association of American Medical Colleges.)

The case of Jamie Fiske and subsequent public appeals for particular children by President Ronald Reagan represent classic cases in pediatric bioethics in which parents or others publicly appealed for a donor organ for a particular child. These raise questions about the appropriate boundaries for public appeals for a limited resource for a particular child and how the press and medical community should respond to such appeals. Public appeals by parents to advocate for their child to receive a limited resource above others promote rationing by morally irrelevant factors and shift the public focus from the national shortage of organs for transplant to the needs of a particular child. Yet these appeals are understandable and will likely continue. Recognizing this, we consider appropriate responses by the media, transplant community, hospitals, and individual clinicians., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

People with diabetes have been experimenting with and modifying their own diabetes devices and technologies for many decades in order to achieve the best possible quality of life and improving their long-term outcomes, including do-it-yourself (DIY) closed loop systems. Thousands of individuals use DIY closed loop systems globally, which work similarly to commercial systems by automatically adjusting and controlling insulin dosing, but are different in terms of transparency, access, customization, and usability. Initial outcomes seen by the DIY artificial pancreas system community are positive, and randomized controlled trials are forthcoming on various elements of DIYAPS technology., Competing Interests: Disclosure The author has given talks and consulted on the topic of open source developments in the APS space with Lilly, Diabeloop, Roche, Tandem, and Novo Nordisk., (Copyright © 2019 Elsevier Inc. All rights reserved.)

The American Diabetes Association (ADA) "Standards of Medical Care in Diabetes" includes the ADA's current clinical practice recommendations and is intended to provide the components of diabetes care, general treatment goals and guidelines, and tools to evaluate quality of care. Members of the ADA Professional Practice Committee, a multidisciplinary expert committee (https://doi.org/10.2337/dc20-SPPC), are responsible for updating the Standards of Care annually, or more frequently as warranted. For a detailed description of ADA standards, statements, and reports, as well as the evidence-grading system for ADA's clinical practice recommendations, please refer to the Standards of Care Introduction (https://doi.org/10.2337/dc20-SINT). Readers who wish to comment on the Standards of Care are invited to do so at professional.diabetes.org/SOC., (© 2019 by the American Diabetes Association.)

This article is a conversation between two academic experts, Callie Rennison and Nikki Jones, who endeavor to sum up what has been accomplished in eliminating violence against women in the United States during the 25 years of the journal's existence. Domestic violence, rape, and sexual harassment are discussed. Although prevalence rates are down in domestic violence, rape and sexual harassment remain persistent problems. Looking at violence against women from an analysis of President Trump voters in the 2016 U.S. presidential election, Rennison and Jones observe the extent to which the current ideas and attitudes of women-both young and old-will need to change before violence can be eliminated. Rather than viewing events in the United States as totally negative, they see them as presenting new opportunities for greater understanding of violence against women and for new methods of prevention and perpetrator accountability.

Aim: This study illuminates the meaning and purpose of clinical presence in nursing leadership in municipal home care from the first-line nurse manager's own perspective., Background: Being a first-line nurse manager in the context of home care is demanding due to demographic changes and an ever-increasing number of elderly suffering from chronic diseases. Leading in this context entails leading from a distance because patients live and receive care in their homes. First-line nurse managers express the importance of clinical presence. However, there is a paucity of studies from home care of the meaning and purpose of presence. The theory of caritative leadership and the model of caring in nursing leadership served as the starting point for this study., Methods: Hermeneutic abductive approach using a purposive sample of three semistructured focus group interviews with 11 first-line nurse managers in home care in three Nordic countries., Result: This study shows that first-line nurse managers described the meaning and purpose of their clinical presence in home care as safeguarding the patient by taking overall responsibility for care, securing the patients' voices, building and maintaining trustful relations, and securing a sensible economy., Conclusion: Our findings indicate that clinical presence serves the purpose of taking the overall responsibility for care and safeguarding the patient. Presence is perceived a necessity to verify staff providing the best possible care. First-line nurse managers acted metaphorically as a shield to protect patient care, which is the main concern in their leadership. The findings add new knowledge to the significance of caring in nursing leadership and the theory of caritative leadership., Implications for Nursing Management: First-line nurse managers need to be clinically present in order to safeguard the patient and to fulfil their threefold responsibilities for the patient, the staff and the economy. This study might also contribute to the political discussion concerning why nurses has to be first-line nurse managers and cannot be replaced by economists., (© 2019 The Authors. Journal of Nursing Management Published by John Wiley & Sons Ltd.)

The advent of patient-focused drug development (PFDD) has underscored the priority of engaging the "voice of the patient" in therapy development. Industry sponsors are working to enhance engagement of patients early, particularly within decision making for design and execution of clinical trials. This trend is especially significant within oncology, as industry leaders partner with patient advocacy organizations, individual patients, and clinicians to enhance patient-centricity. These partnerships often require a willingness to change attitudes, approaches, and processes to reshape traditional models of drug development. In 2016, Bayer Oncology launched a pilot program called the Patient Advocate Advisory Council (PAAC), to design and execute a program whereby patients join clinical development teams. The PAAC, composed of experienced patient advocates from the US and Europe, worked closely with company leaders to design and execute a pilot in an ongoing clinical development program. The PAAC and Bayer teams have identified important learnings from the first phase of the program, emphasizing earlier engagement of patient advisors, launching the enhanced training platform, and recruiting additional PAAC members to expand the initiative's reach across the cancer community. A critical success factor is having champions for patient engagement within the company to ensure that activities are streamlined and standardized as patient engagement becomes more common. This is particularly important given that patient engagement should be a long-term investment with sufficient and sustained resources. PAAC members and Bayer have committed to sharing learnings, to advance opportunities for successful patient engagement in drug development throughout the oncology therapeutic landscape.

This article draws upon qualitative interviews in order to examine how UK based research psychologists understand public engagement activities and interactions with autistic advocates. Researchers describe public engagement as difficult and understand these difficulties as stemming from autistic impairments. In particular, it is reported that a heterogeneity of autism impairments means there is little agreement on the form research should take, while socio-communicative impairments make interactions difficult. Conversely, researchers describe autistic individuals as having the capacity to positively influence research. In this paper we discuss the nature of these claims and stress the need for autism-specific modes of engagement to be developed.

This article delves into the views of 72 leaders in domestic violence and sexual assault advocacy, policy, service, and research to determine their vision for the future direction of the field. Through discussions with experts, we identified numerous strategies necessary to best meet the needs of domestic violence and sexual assault victims. Common themes focused on the need to (a) examine the context of victims' and offenders' experiences; (b) increase cultural competence to adequately provide appropriate victim services and criminal justice responses for underserved, marginalized, and culturally specific populations; (c) increase reliance on victims' voices; (d) continue to develop partnerships at both the community and the state levels and ensure the role of local communities; (e) expand the concept of successful outcomes that can be reliably and validly assessed; (f) emphasize mixed-methods approaches to address these questions, in recognition that various methods complement each other; and (g) be open to novel or emerging approaches to intervention.

Nurse practitioners can be a powerful frontline force by collectively raising awareness of human trafficking (HT) through education; advocating for policy change at the local/state/federal level, providing primary prevention for contributory risk factors; and building a strong HT prevention program with the Social-Ecological Model. Together, NPs can lead through practice, education, advocacy, and research to promote optimal health outcomes and to end human trafficking.

In the 21st century, public health is not only about fighting infectious diseases, but also contributing to a "multidimensional" well-being of people (health promotion, non-communicable diseases, the role of citizens and people in the health system etc.). Six themes of public health, issues of the 21st century will be addressed. Climate change is already aggravating already existing health risks, heat waves, natural disasters, recrudescence of infectious diseases. Big data is the collection and management of databases characterized by a large volume, a wide variety of data types from various sources and a high speed of generation. Big data permits a better prevention and management of disease in patients, the development of diagnostic support systems and the personalization of treatments. Big data raises important ethical questions. Health literacy includes the abilities of people to assess and critique and appropriate health information. Implementing actions to achieve higher levels of health literacy in populations remains a crucial issue. Since the 2000s, migration flows of health professionals have increased mainly in the "south-north" direction. India is the country with the most doctors outside its borders. The USA and the UK receive 80% of foreign doctors worldwide. Ways have been identified to try to regulate the migratory phenomena of health professionals around the world. The mobilization of citizen, health system users and patient associations is a strong societal characteristic over the last 30 years. In a near future, phenomena will combine to increase the need for accompaniment of patient or citizen to protect health, such increase of the prevalence of chronic diseases, reinforcement of care trajectories, medico-social care pathways, and importance of health determinants. Interventional research in public health is very recent. It is based on experimentation and on the capitalization of field innovations and uses a wide range of scientific disciplines, methods and tools. It is an interesting tool in the arsenal of public health research. It is essential today to be able to identify the multiple challenges that health systems will face in the coming years, to anticipate changes, and to explore possible futures.

Long-term care ombudsmen are resident advocates who receive, investigate, and resolve complaints relating to quality of care and violations of resident rights in assisted living (AL). More research is needed to understand systemic differences in source, type, and number of ombudsman complaints in AL. Ombudsman complaint data (n = 5,705 complaints) in small, medium, and large ALs in Dallas, Texas were analyzed using proportion Z tests. Findings suggest that all facilities had a high number of environmental complaints. Compared to larger facilities, small ALs have a disproportionately high number of complaints, a significantly higher number of complaints related to access to information, visitors, and ombudsmen, lower number of complaints related to care and staffing, family are less likely to complain, and residents are least likely to voice concerns. We recommend strategies for ombudsmen and AL providers to better meet residents' needs. We conclude with a call to action underscoring the increasing importance of the role of the ombudsman in AL.

The role of the patient in bedside teaching has long been a matter of consideration in health professions education. Recent iterations of patient engagement include patients as storytellers, members of curriculum planning committees, guest lecturers, and health mentors. While these forms of patient engagement are reported to have many benefits for learners, educators, and the patients themselves, there is concern that such programs may not be representative of the diversity of patients that health care professionals will encounter throughout their careers. This problem of representation has vexed not only educators but also sociologists and political scientists studying patients' and the public's involvement in arenas such as health services research, policy, and organizational design.In this Perspective, the authors build on these sociological and political science approaches to expand our understanding of the problem of representation in patient engage-ment. In doing so, the authors' reconfiguration of the problem sheds new light on the dilemma of representation. They argue for an understanding of representation that not only is inclusive of who is being represented but that also takes seriously what is being represented, how, and why. This argument has implications for educators, learners, administrators, and patient participants.

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The author has indicated she has no potential conflicts of interest to disclose.

Nurses have historically played a key role in advocacy and service for all members of the community, including those who are traditionally underserved by other providers or the health system. Nurses from a local Atlanta community health system, both clinical and administrative, have continued this tradition by developing an advocacy and service program for the downtown homeless of Atlanta. From its beginnings as a highly informal volunteer program to its current structure as a strongly integrated community health center for the underserved and homeless of Atlanta, local nurses have demonstrated their strong value of service advocacy. Their leadership, insight, discipline, and strategic development have facilitated the growth of a focused, viable health service network for marginalized people of the city of Atlanta.

Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

The social determinants of health (SDOH) are receiving increased attention due to their influence on health disparities, health outcomes, and overall quality of life. Nurse leaders must take an active role in advocating for strategies that address these important issues. The purpose of this descriptive study was to explore nurses' knowledge, attitudes, and behaviors related to SDOH. A sample of 107 registered nurses completed the SDOH survey. Findings revealed that nurses experience personal discomfort and anticipate patient discomfort related to addressing the SDOH in their practice. They also voice a lack of skill, lack of time, and a dependency on other professionals to address these issues. The findings highlight the need for nurse leaders to advocate for nurses and those they care for through policy development, collaboration, and education. Based on the findings of this study, multiple strategies for nurse leaders serving as advocates are presented.

One of the greatest health care challenges of the 21st century is the rapidly growing number of older adults in the United States. This aging population is also becoming increasingly diverse, and with this diversity comes an increased number of older adults who identify as lesbian, gay, bisexual, and transgender (LGBT). The needs and health outcomes of this specific subgroup of the older adult population cannot be extrapolated from the more general population of older adults. Nurses have the opportunity to lead health care providers in improving care for this vulnerable and sometimes invisible population. Leading this charge will require nurse executives who advocate, create care environments that are inclusive, and staff with nurses who can care for the specific needs of LGBT older adults. The purpose of this article is to raise awareness of the health needs of LGBT older adults and identify how nurse executives can advocate to improve care for this overlooked population.

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Inequalities are the result of the different positions held by individuals in different social spaces, and are related to the distribution of power and property. Health advocacy is a strategy to reduce such inequalities, especially those considered unfair and unnecessary, aiming to fully promote the right to health. This study aims to discuss the contribution of nursing in the field of health advocacy, which includes the right of everyone to a healthy life as one of the strategies for the reorientation of the Brazilian healthcare model.

Patient advocacy is seen as a critical role for the nursing profession. Although there is an existing body of literature surrounding the registered nurse level of patient advocacy, little is known about the advanced practice registered nurse (APRN) and patient advocacy. This article examines the existing patient advocacy research literature and existing APRN competencies to provide direction for further research., (© 2017 Wiley Periodicals, Inc.)

OBJECTIVE A recent survey has shown that caregivers of children with shunt-treated hydrocephalus frequently use social media networks for support and information gathering. The objective of this study is to describe and assess social media utilization among users interested in hydrocephalus. METHODS Publicly accessible accounts and videos dedicated to the topic of hydrocephalus were comprehensively searched across 3 social media platforms (Facebook, Twitter, and YouTube) throughout March 2016. Summary statistics were calculated on standard metrics of social media popularity. A categorization framework to describe the purpose of pages, groups, accounts, channels, and videos was developed following the screening of 100 titles. Categorized data were analyzed using nonparametric tests for statistical significance. RESULTS The authors' search identified 30 Facebook pages, 213 Facebook groups, 17 Twitter accounts, and 253 YouTube videos. These platforms were run by patients, caregivers, nonprofit foundations, and patient support groups. Most accounts were from the United States (n = 196), followed by the United Kingdom (n = 31), Canada (n = 17), India (n = 15), and Germany (n = 12). The earliest accounts were created in 2007, and a peak of 65 new accounts were created in 2011. The total number of users in Facebook pages exceeded those in Facebook groups (p < 0.001). The majority of users in Facebook groups were in private groups, in contrast to public groups (p < 0.001). The YouTube videos with the highest median number of views were for surgical products and treatment procedures. CONCLUSIONS This study presents novel observations into the characteristics of social media use in the topic of hydrocephalus. Users interested in hydrocephalus seek privacy for support communications and are attracted to treatment procedure and surgical products videos. These findings provide insight into potential avenues of hydrocephalus outreach, support, or advocacy in social media.

The Swampscott report was foundational, but in some ways reflected divisions within community psychology that have continued into the present. Community psychologists trained in the 1970s and, especially, the 1980s confronted a period where the original focus of community mental health began to have less influence in the mental health field due to a variety of public policies, and the growth of third party payments as a significant source of health care funding. Programs that engaged communities and provided a base for prevention interventions were greatly curtailed because of changes in federal legislation and limited opportunities for state and local funding, although prevention interventions found growing interest from research funders. Clinical and community psychologists who trained in this period increasingly looked to a variety of areas outside of mental health. Consequently, the field of community psychology has become more applied and less academic, with increased attention to advocacy, theory, and global perspectives. The sweep of these changes and their implications for the future of the field are discussed here., (Published 2016. This article is a U.S. Government work and is in the public domain in the USA.)

Background: Patient advocacy is central to the nursing profession yet a sense of certainty about the concept, its meaning and its implications for nursing practice remains elusive., Aim: This scholarly paper examines the concept of patient advocacy and its relevance to the nursing profession in Aotearoa/New Zealand., Design: A broad historical overview of the evolution of the role of advocacy in nursing practice is provided including factors that encourage or discourage nurses to practice patient advocacy., Conclusions: This paper highlights the gap between the ideal of patient advocacy and the realities of everyday nursing practice. The responsibility for enacting advocacy sits with both individual practitioners and the organizations nurses work within.

This study investigates a puzzle concerning global health priorities-why do comparable issues receive differential levels of attention and resources? It considers maternal and neonatal mortality, two high-burden issues that pertain to groups at risk at birth and whose lives could be saved with effective intrapartum care. Why did maternal survival gain status as a global health priority earlier and to a greater degree than newborn survival? Higher mortality and morbidity burdens among newborns and the cost-effectiveness of interventions would seem to predict that issue's earlier and higher prioritization. Yet maternal survival emerged as a priority two decades earlier and had attracted considerably more attention and resources by the close of the Millennium Development Goals era. This study uses replicative process-tracing case studies to examine the emergence and growth of political priority for these two issues, probing reasons for unexpected variance. The study finds that maternal survival's grounding as a social justice issue spurred growth of a strong and diverse advocacy network and aligned the issue with powerful international norms (e.g. expectations to advance women's rights and the Millennium Development Goals), drawing attention and resources to the issue over three decades. Newborn survival's disadvantage stems from its long status as an issue falling under the umbrellas of maternal and child survival but not fully adopted by these networks, and with limited appeal as a public health issue advanced by a small and technically focused network; network expansion and alignment with child survival norms have improved the issue's status in the past few years., (Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Organizations that pursue health advocacy often tackle other issues too. How do these multi-issue organizations articulate and combine health with other issues? We examine how a Los Angeles coalition focused primarily on housing took up health in its 2008-2011 campaign against a residential development. Participant observation and archival data reveal that cultural context influenced how the coalition made claims about health, in two ways. First, advocates shared two major symbolic categories, which oriented the great bulk of their appeals regarding health. Second, advocates crafted rhetorical appeals that reflected their shared sense of social identity and obligation as spokespersons for a distinctive kind of community. These two kinds of cultural context influenced advocates' claims in public, formal settings as well more internal communication. These distinct, cultural influences on claims-making create challenges for socioeconomically diverse coalitions collaborating on health problems., (Copyright © 2016 Elsevier Ltd. All rights reserved.)