Use of Pain Management Champions to Enhance Guideline Implementation by Care Workers in Nursing Homes.

BACKGROUND: Underutilization of evidence-based pain management in nursing homes (NHs) is common. Evidence toward effective approaches to improve adoption of evidence-based practices in NHs is limited. Application of theory in evaluation approaches can increase understanding of implementation challenges. AIM: To get a better understanding of the impact of implementation strategies by exploring the underlying mechanisms using behavioral theory. METHODS: This mixed-methods study is embedded in an implementation-effectiveness study of a pain management guideline in four Swiss NHs. To evaluate our implementation strategies, training workshops were held, and trained pain champions were introduced. We also developed a conceptual framework. Based on Bandura's self-efficacy theory, we hypothesized how our implementation strategies might affect changes in care workers' behavior. Care workers' questionnaire surveys were conducted at baseline (n = 136), after 3 months (n = 99), and after 6 months (n = 83) to assess self-efficacy in pain management and self-reported guideline adoption. We computed linear mixed-effect models to assess changes over time in self-efficacy and logistic regressions to assess associations between self-efficacy and guideline adoption. Concurrently, we conducted focus groups with care workers (n = 8) to explore their response to the implementation strategies. RESULTS: Overall, there was a significant increase in self-efficacy at both time points (p < .001). We found significant associations between self-efficacy and adoption of two guideline components, that is, performing a comprehensive pain assessment and using observational pain assessment tools in cognitively impaired residents. Qualitative findings showed that implementation strategies were received positively by care workers. Focus group participants reported more attentiveness to residents' pain experience. The participants also reported increases in assessment and documentation of pain with more detail than before. LINKING EVIDENCE TO ACTION: Our findings highlighted that the training and use of pain champions increased self-efficacy and thereby induced behavior change leading to guideline adoption. Regarding persistent implementation challenges, a theory-based conceptual model contributes to the overall understanding.

Self-advocacy is associated with lower likelihood of living donor kidney transplantation.

BACKGROUND: The Living Donor Navigator (LDN) Program pairs kidney transplant candidates (TC) with a friend or family member for advocacy training to help identify donors and achieve living donor kidney transplantation (LDKT). However, some TCs participate alone as self-advocates. METHODS: In this retrospective cohort study of TCs in the LDN program (04/2017-06/2019), we evaluated the likelihood of LDKT using Cox proportional hazards regression and rate of donor screenings using ordered events conditional models by advocate type. RESULTS: Self-advocates (25/127) had lower likelihood of LDKT compared to patients with an advocate (adjusted hazard ratio (aHR): 0.22, 95% confidence interval (CI): 0.03-1.66, p = 0.14). After LDN enrollment, rate of donor screenings increased 2.5-fold for self-advocates (aHR: 2.48, 95%CI: 1.26-4.90, p = 0.009) and 3.4-fold for TCs with an advocate (aHR: 3.39, 95%CI: 2.20-5.24, p < 0.0001). CONCLUSIONS: Advocacy training was beneficial for self-advocates, but having an independent advocate may increase the likelihood of LDKT.

Sustained type 1 diabetes self-management: Specifying the behaviours involved and their influences.

AIMS: Sustained engagement in type 1 diabetes self-management behaviours is a critical element in achieving improvements in glycated haemoglobin (HbA1c) and minimising risk of complications. Evaluations of self-management programmes, such as Dose Adjustment for Normal Eating (DAFNE), typically find that initial improvements are rarely sustained beyond 12 months. This study identified behaviours involved in sustained type 1 diabetes self-management, their influences and relationships to each other. METHODS: A mixed-methods study was conducted following the first two steps of the Behaviour Change Wheel framework. First, an expert stakeholder consultation identified behaviours involved in self-management of type 1 diabetes. Second, three evidence sources (systematic review, healthcare provider-generated 'red flags' and participant-generated 'frequently asked questions') were analysed to identify and synthesise modifiable barriers and enablers to sustained self-management. These were characterised according to the Capability-Opportunity-Motivation-Behaviour (COM-B) model. RESULTS: 150 distinct behaviours were identified and organised into three self-regulatory behavioural cycles, reflecting different temporal and situational aspects of diabetes self-management: Routine (e.g. checking blood glucose), Reactive (e.g. treating hypoglycaemia) and Reflective (e.g. reviewing blood glucose data to identify patterns). Thirty-four barriers and five enablers were identified: 10 relating to Capability, 20 to Opportunity and nine to Motivation. CONCLUSIONS: Multiple behaviours within three self-management cycles are involved in sustained type 1 diabetes self-management. There are a wide range of barriers and enablers that should be addressed to support self-management behaviours and improve clinical outcomes. The present study provides an evidence base for refining and developing type 1 diabetes self-management programmes.

Assessing the potential of a Virtual Patient Advocate to provide preconception care and health advice to women living in Australia.

A preconception Virtual Patient Advocate (VPA) called "Gabby" supported African-American women to decrease their preconception health risks and may be a scalable resource to increase women's access to preconception care. Aims were to assess the acceptability of a preconception VPA in women living in Australia and document the changes required to adapt Gabby to suit an Australian context. Taking a descriptive qualitative approach, nonpregnant female participants (n = 31), aged 18-45 years, living in metropolitan and regional Victoria, Australia interacted with Gabby. Focus groups (n = 7) that gathered participants' perspectives of their experience with Gabby ran in July-August 2019 before being transcribed verbatim and thematically analyzed. Six interrelated themes and 12 subthemes were identified. Participants found VPAs to be an acceptable provider of health information with potential to increase women's access preconception health advice. Gabby was considered to be trustworthy and was able to develop rapport with participants in a relatively short time. Context-specific, relevant, tailored and trustworthy information and advice were considered more important that Gabby's physical appearance. Participants had strong opinions about potential technological advancements (e.g., reminders and rewards) and addressing navigation issues to increase Gabby's acceptability. Participants envisaged that they would use Gabby for readily available and evidence-based information before seeking advice from a health professional if required. Overall, the concept VPAs to provide preconception advice and Gabby were acceptable to participants. Future development of VPAs, Gabby, and other online technology-based resources should consider women's high expectations of the online health information they choose to interact with.

Perception and opinion of nursing faculties regarding advocacy role: A qualitative research.

BACKGROUND: The nursing literature emphasizes that there are still inadequacies, differences, and inconsistencies in the definition of nurses' advocacy role, and that nursing education plays an important role in educating nurses for patient advocacy. OBJECTIVE: The aim of this descriptive qualitative study is to determine nurse academics' perception of and opinions about advocacy in nursing. METHODS: The study group consisted of five academics working as nurse educators in a university. A questionnaire and focus group interview methods were used to collect the data. RESULTS: A framework that consisted of three categories, including the scope of advocacy in nursing; today's health system and advocacy; nurses' foundation/knowledge base for an advocacy role was set by considering the opinions of participants. CONCLUSION: It was emphasized that nurse academics regarded advocacy as an ethical obligation and saw it from a broad perspective including social justice, that changing health system has increased the importance of advocacy role in nursing, that the personality characteristics of prospective nurses are important, and that nursing education should be improved in terms of advocacy.

On Answering the Call to Action For COVID-19: Continuing a Bold Legacy of Health Advocacy.

The disproportionately high burden of death and disability observed for racial and ethnic minorities under the Coronavirus pandemic necessitates sustained advocacy by the medical and public health communities around critical determinants of population health. Prompting our advocacy should be the understanding that our collective ability to rebound from such crises may ultimately hinge on protecting and equipping our most vulnerable racial-ethnic minority groups and any susceptible individuals within those populations. If proven effective, recent historic firsts by the U.S. Department of Health and Human Services (HHS), through the Health Resources and Services Administration (HRSA), the Office of Minority Health (OMH) and the Centers for Disease Control and Prevention (CDC) in response to COVID-19 should be championed for permanency within policy, practice and funding. In addition, given the complex history of Black Americans in this country and persistent and substantial Black-white disparities on health and economic measures across the board, some kind of reparations for this group may serve as a logical starting point for further advocacy. Nevertheless, we remain supportive allies of all organizations concerned with communities who suffer the weight of this pandemic and any future world health disasters. Let us as human clinicians and public health professionals capture this moment of challenge and engage in thoughtful unification of effort and commit to measurable progress for as long as the need exists and certainly for the foreseeable future.

Development of the Uncertainty Communication Checklist: A Patient-Centered Approach to Patient Discharge From the Emergency Department.

Clear communication with patients upon emergency department (ED) discharge is important for patient safety during the transition to outpatient care. Over one-third of patients are discharged from the ED with diagnostic uncertainty, yet there is no established approach for effective discharge communication in this scenario. From 2017 to 2019, the authors developed the Uncertainty Communication Checklist for use in simulation-based training and assessment of emergency physician communication skills when discharging patients with diagnostic uncertainty. This development process followed the established 12-step Checklist Development Checklist framework and integrated patient feedback into 6 of the 12 steps. Patient input was included as it has potential to improve patient-centeredness of checklists related to assessment of clinical performance. Focus group patient participants from 2 clinical sites were included: Thomas Jefferson University Hospital, Philadelphia, PA, and Northwestern University Hospital, Chicago, Illinois.The authors developed a preliminary instrument based on existing checklists, clinical experience, literature review, and input from an expert panel comprising health care professionals and patient advocates. They then refined the instrument based on feedback from 2 waves of patient focus groups, resulting in a final 21-item checklist. The checklist items assess if uncertainty was addressed in each step of the discharge communication, including the following major categories: introduction, test results/ED summary, no/uncertain diagnosis, next steps/follow-up, home care, reasons to return, and general communication skills. Patient input influenced both what items were included and the wording of items in the final checklist. This patient-centered, systematic approach to checklist development is built upon the rigor of the Checklist Development Checklist and provides an illustration of how to integrate patient feedback into the design of assessment tools when appropriate.

Naitbabies - A patient organisation for families affected by foetal and neonatal alloimmune thrombocytopenia - FNAIT.

Naitbabies is a small Charitable Incorporated Organisation (CIO) (Foundation) registered in England, United Kingdom and run by families who have been diagnosed with foetal and neonatal alloimmune thrombocytopenia (FNAIT). FNAIT is a rare, life threatening bleeding disorder caused by the maternal immune response against fetal platelet antigens. Clinical research shows that approximately 1:1000 babies are affected by this disorder; of those 5-10 % will suffer internal bleeding, most particularly intracranial haemorrhage. As the only patient organisation for FNAIT, we advocate for parents worldwide; as of July 8th 2019 our Parents Support Group numbered 1250 members. We support research into FNAIT, its causes, treatment and prevention. Since 2012 we have been collaborating with scientists who have been engaged on a programme to develop a prophylactic treatment to prevent FNAIT in HPA-1a negative women. Our aim is to see routine prenatal screening for FNAIT for all pregnant women.

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33-37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium-68-Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two-thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.

Symbolic sexism: superficial or serious bias? An investigation into images on patient call bells.

OBJECTIVES: To determine whether gendered symbols on patient call bells are restricted to our hospital or are examples of an international practice that perpetuates gender stereotypes and occupational segregation. SETTING: Multicentre, international study of hospital equipment, 2018. MAIN OUTCOME MEASURE: Types of symbols on patient call bells. RESULTS: We received 56 responses from 43 hospitals in eight countries across five continents: 37 devices included female-specific images, nine included gender-neutral images, and ten did not use imagery (for example, button-only devices). No call bells included male-specific images. CONCLUSION: Female symbols on patient call bells are an international phenomenon. Only female or gender-neutral images are used, indicating bias in their design, manufacture, and selection. Female symbols may reinforce gender stereotypes and contribute to occupational segregation and reduced equity of opportunity. We suggest alternative symbols. Individual action with coloured marker pens may provide a pragmatic short term, albeit provocative, solution. While call bell design has only a minor impact on patients, everyday bias affects all staff and society in general.

Advocacy With Survivors of Intimate Partner Violence: What It Is, What It Isn't, and Why It's Critically Important.

Survivors of intimate partner violence arrive at the doors of domestic violence (DV) programs with a wide variety of needs, including long-term safety and healing, housing, economic stability, health and well-being, and community connection. Although some DV programs offer holistic approaches to survivors, many focus the vast majority of their attention and resources on providing emotional support and safety planning rather than advocating with survivors for their access to needed resources and opportunities. Although services focused on emotional support and safety planning are important, they alone are not likely to result in the life changes that many survivors are seeking. Programs that provide genuine advocacy for survivors-defined as partnering with them to represent their rights and interests while linking them to concrete resources, protections, and opportunities-have been found to be effective and well received. Although an early pillar of DV programs, this type of advocacy has fallen by the wayside in many agencies. In this article, the authors make a case for re-invigorating advocacy efforts designed to improve the life circumstances of survivors. We argue that such efforts will make DV programs more relevant and sought after by a wider range of survivors and that agencies will see real change occur at both the individual and community levels.

A Content Analysis of Patient Advocacy Organization Policies Addressing Institutional Conflicts of Interest.

Introduction: Patient advocacy organizations (PAOs) provide patient education, raise public awareness, and influence health policy for a wide range of diseases. These organizations frequently receive financial support form from drug, device, and biotechnology companies. Though PAOs often develop policies to address institutional conflicts of interest arising from industry relations, little is known about the substance of these policies. Methods: We sampled all PAOs that are members of the National Health Council. Using a standardized search strategy, all policies were obtained from each organization if publicly available. We reviewed policies for content related to restrictions on corporate partnerships, disclosure of corporate funding, and governance and monitoring of corporate partnerships. Results: We found that 24 of 47 (51%) organizations had policies that addressed institutional conflict of interest. A total of 9 of those 24 (38%) policies placed any restriction on the types of corporations that the PAO would or would not partner with. While 16 of the 24 (67%) outlined some process for disclosure of the organization's corporate donors, only 5 of 24 (21%) specified a manner for disclosing the financial value of those donations. Further, 15 of the 24 (63%) policies identified the person or persons responsible for approving corporate partnerships. However, 17 (71%) failed to address or specify the person(s) responsible for ongoing review of those partnerships. Conclusion: Nearly half of the organizations studied did not have publicly available conflict of interest policies. Among those that did, few policies had a substantial level of detail or limitations to guard against conflicts of interest.

Update on Reproductive Rights and Women's Mental Health.

Reproductive rights are essential to the recognition/treatment of women as full-fledged human beings/citizens. Barriers to reproductive rights pose a grave danger to women's well-being. This article explores the origins of these barriers, their nature, and their impact on mental health. The most controversial relationship is between induced abortion and mental health. Barriers, misinformation, and coercion affecting contraceptive, abortion, and pregnancy care are an ongoing danger to women's mental health and the well-being of their families. Mental health professionals are best qualified, and have an obligation, to know the facts, apply them, and provide accurate information to protect women's health.

Prevalence and Disclosure of Potential Conflicts of Interest in Dermatology Patient Advocacy Organizations.

Importance: Patient advocacy organizations are nonprofit organizations that represent patients with medical conditions. Although these organizations may increase disease awareness and influence health care policy, reports have suggested financial relationships between organizations and drug, device, and biotechnology companies, which may lead to potential conflicts of interest. The extent of these conflicts has not been explored among patient advocacy organizations in dermatology. Objective: To examine potential financial conflicts of interest and characterize disclosure practices among dermatology patient advocacy organizations. Design, Setting, and Participants: This cross-sectional study of the largest dermatology patient advocacy organizations using the Kaiser Health News database acquired data on total revenue from each organization's Form 990 for the year 2015. Tax forms and annual reports from 2017 were used for 2 organizations that were missing donor information for 2015. Annual reports, websites, and LinkedIn profiles were manually examined to ascertain donations and determine disclosure practices pertaining to financial support and board membership. Main Outcomes and Measures: The amount and minimum proportion of donations attributable to industry sponsorship among organizations as well as the proportion of organizations disclosing (1) industry-sponsored financial support, (2) the amount of industry-derived donations, and (3) current and past relationships between governing board members and industry sponsors. Results: This study identified 24 dermatology patient advocacy organizations with annual revenues that exceeded $500 000. Of these, 5 (21%) had total donations that exceeded $5 million and 4 (17%) reported industry donations that exceeded $500 000. Two organizations (8%) reported having at least 40% of total donations from industry sponsorship. Overall, 17 organizations (71%) reported receiving donations from industry on the annual report or the website and 12 (50%) reported the amount of donations in ranges. None of the organizations reported the exact amount or use of donations. On the basis of annual reports and websites, 3 organizations (13%) reported having a current or former industry executive on the organization's governing board. When this search was replicated using LinkedIn, this figure was at least 54%. Conclusions and Relevance: These findings suggest inconsistent disclosure of industry-derived financial support and board membership that may represent conflicts of interest. Policies that support the transparency and consistency of disclosure practices between industry and patient advocacy organizations appear to be needed to fully characterize the extent of conflicts of interest among patient advocacy organizations in dermatology and maintain trust in these important institutions.

"Suddenly Everyone's an Expert in Our Field": Campus Victim Advocates and the Promise and Perils of Professionalization.

Changes in how campuses respond to sexual assault under Title IX may dramatically alter the experiences of survivors and the roles of responders. This exploratory study examines how the roles of campus-based sexual assault victim advocates are changing and the effects on advocacy and survivors. Although most advocates agree that Title IX has increased awareness and reporting of sexual assault, they are concerned about the loss of confidential outlets for reporting, conflicts with other responders, and devaluation of their role. Some advocates see professionalization as a solution, whereas others worry that professionalization might negatively affect their ability to serve survivors.

A Nationwide Evaluation of Services Provided to Domestic Violence Survivors at Shelters in Bosnia-Herzegovina.

The shelter movement in Bosnia-Herzegovina was born out of a tradition of assisting survivors of gender-based violence in the early 1990s during the Bosnian conflict. To date, nine shelters are in existence providing emergency shelter and services to survivors. Little is known about these shelters, or the clients these shelters serve. The purpose of this study is to examine what services are provided to domestic violence survivors by shelters in Bosnia-Herzegovina and who these survivors are. A total of 43 service providers from all existing shelters within the country were surveyed about shelter characteristics, client demographics, and services provided. Findings revealed that the typical Bosnian shelter had been in operation for 11 years and had assisted 64 survivors in the previous year; the majority of whom were married females with minor children who had sought shelter services before. Core services were provided by the majority of shelters, including crisis services, legal and medical advocacy, counseling, and community education. While services were provided to a diverse group of survivors (e.g., children, elderly women, victims of human trafficking), shelters were less likely to be available for male and lesbian, gay, bisexual, and transgender survivors. Implications from these findings, as well as limitations and suggestions for further research, are discussed.

Disseminating the Community Advocacy Project in Mexico: A Feasibility Study.

The Community Advocacy Project is an evidence-based practice that has been shown to lead to numerous positive changes in the lives of intimate partner violence (IPV) survivors. Prior research conducted in the Midwest United States, and with primarily African American and Anglo American survivors, has shown that this short-term, community-based advocacy intervention results in increased safety and quality of life even 2 years after the intervention ends. The current study describes the process of culturally adapting and disseminating this program in Monterrey, Mexico, with a sample of low-income Mexican IPV survivors exposed to a variety of considerable contextual stressors. Interviews were conducted with advocates, advocate supervisors, and survivors to examine the acceptability and utility of the intervention. Twenty-seven IPV survivors, seven advocates, and four advocate supervisors participated in the intervention research. Advocates and their supervisors were highly laudatory, believing the intervention to be culturally relevant and effective. Encouraging changes were found for survivors as well, with positive changes over time being found on safety, quality of life, social support, and depression.

Nurses' Advocacy of Clinical Pain Management in Hospitals: A Qualitative Study.

BACKGROUND AND AIMS: In hospitals, efficient pain care given by nurses is warrented because pain prevalence in the previous 24 hours has been reported to be high. This study aims to clarify nurse's experiences with pain management as a specific responsibility added to their regular clinical duties. In addition, this study aims to elucidate these nurses' attitudes about sharing their pain knowledge with their colleagues. DESIGN, PARTICIPANTS AND METHODS: This study includes semi-structured interviews of 17 registered staff nurses at the University Hospital, Linköping Sweden. The interviews were analyzed using a qualitative content analysis. RESULTS: A main thematic category emerged: Selected nurses experience shortcomings and obstacles in clinical pain management and are willing to improve their knowledge and share it with their colleagues. This main category was based on the following four sub-categories: a valued but unclear assignment; the presence of facilitators and obstacles; in need of support and collaboration; and a deficit of own knowledge and future teaching of colleagues. CONCLUSIONS: Overall, the nurses maintained a constructive attitude about their responsibilities to teach colleagues about pain management in spite the difficulties they experienced fulfilling all their responsibilities. Nurses who have the added responsibility to teach their colleagues pain management need specialized education in pain management and pedagogic skills for teaching clinical pain management. Moreover, these nurses need to be given the time, support, and collaborative opportunities to develop their knowledge. A nursing model that provides nurses trained in pain management education should be developed and evaluated.

Advocacy care on HIV disclosure to children.

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families' experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in-depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members' discourse highlighted two ways of knowing their own condition and disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self-care with autonomy.

Using Google Trends to explore the New Zealand public's interest in bariatric surgery.

BACKGROUND: Bariatric surgery, in recent times, has gained media attention that has influenced individual, healthcare provider and wider societal attitudes towards bariatric surgery. Studies exploring public and media levels of interest in bariatric surgery have been performed overseas but studies within New Zealand (NZ) are scarce. Analysis of Google Trends data may be a useful source of information in investigating public interest levels in bariatric surgery. We aimed to analyse Google Trends information on Internet searches in NZ and to explore sequential relationships with relevant changes in policy. METHODS: Key search terms for our Google Trends query were retrieved by independently reviewing news articles relating to bariatric surgery in NZ published between January 2007 and December 2017 and following a brainstorming session. Trend analyses were performed using Microsoft Excel 14.7.2. Data were captured for both NZ and worldwide search interests in Google Trends. RESULTS: Trend analyses showed that total search volumes for 'lap band' and 'lap band surgery' declined while 'gastric sleeve' and 'gastric sleeve surgery' increased exponentially over the 10-year period. Furthermore, search interests for key terms in NZ were comparable with those worldwide. CONCLUSION: Our findings reveal that search interests related to bariatric surgery in NZ mirror those worldwide. This includes the popularity of some bariatric procedures over others. The use of Google Trends may provide us with an additional tool to evaluate public interest levels related to bariatric surgery in NZ and could add value in examining the socio-cultural and political contexts of obesity and bariatric surgery.