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.

Marginally Represented Patients and the Moral Authority of Surrogates.

Incapacitated adult patients are commonly divided into two groups for purposes of decision making; those with a surrogate and those without. Respectively, these groups are often referred to as represented and unrepresented, and the relative ethics of decision making between them raises two particular issues. The first issue involves the differential application of the best interests standard between groups. Second is the prevailing notion that representedness and unrepresentedness are categorical phenomena, though it is more aptly understood as a multidimensional and continuous variable based on relational moral authority. This paper examines the nature of representedness as it relates to ethical norms of surrogate decision making.

Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

Developing a Patient Charter for People Living With Conditions, Diseases, or Traumas Involving the Skin [Formula: see text].

BACKGROUND: Studies have shown disparities in the perception of skin disease burden between patients and physicians, with patients often feeling that the severity, emotional impact, and social repercussions of their skin condition are underestimated. Although physician's professional behavior is guided by documents such as the Hippocratic Oath, there are no patient-driven principles to guide healthcare interactions involving skin concerns. OBJECTIVE: To develop a concise and practical charter for patients based on their perceptions of unmet needs with the goals of helping patients express their needs and exercise their rights to accessing and utilizing the healthcare system for conditions, diseases, or traumas involving the skin. METHODS: An initial literature review examined healthcare delivery concerns of patients with skin conditions. Results were used to draft a charter that was reviewed by a Canadian patient focus group representing various skin condition advocacy groups. A revised charter was reviewed by Canadian dermatologists before being formally approved by the Canadian Skin Patient Alliance Board and endorsed by the Canadian Dermatology Association. RESULTS: The Patient Charter comprises 8 principles for providing and receiving professional services for the skin in the healthcare setting. CONCLUSIONS: This Patient Charter provides direct insights into patient priorities and will be used as an educational and advocacy tool in healthcare, occupational, and social settings. The intended goal is for the Patient Charter to empower patients and to educate health professions, government, industry, and society at large. Accordingly, the charter will be disseminated through print materials, informational videos, and social media campaigns.

The advocacy role of nurses in cardiopulmonary resuscitation.

BACKGROUND: The decision whether to initiate cardiopulmonary resuscitation may sometimes be ethically complex. While studies have addressed some of these issues, along with the role of nurses in cardiopulmonary resuscitation, most have not considered the importance of nurses acting as advocates for their patients with respect to cardiopulmonary resuscitation. RESEARCH OBJECTIVE: To explore what the nurse's advocacy role is in cardiopulmonary resuscitation from the perspective of patients, relatives, and health professionals in the Basque Country (Spain). RESEARCH DESIGN: An exploratory critical qualitative study was conducted from October 2015 to March 2016. Thematic analysis was used to analyse the data. PARTICIPANTS: Four discussion groups were held: one with patients and relatives (n = 8), two with nurses (n = 7 and n = 6, respectively), and one with physicians (n = 5). ETHICAL CONSIDERATIONS: Approval was obtained from the Basque Country Clinical Research Ethics Committee. FINDINGS: Three significant themes were identified: (a) accompanying patients during end of life in a context of medical dominance, (b) maintaining the pact of silence, and (c) yielding to legal uncertainty and concerns. DISCUSSION: The values and beliefs of the actors involved, as well as pre-established social and institutional rules reduced nurses' advocacy to that of intermediaries between the physician and the family within the hospital environment. On the contrary, in primary health care, nurses participated more actively within the interdisciplinary team. CONCLUSION: This study provides key information for the improvement and empowerment for ethical nursing practice in a cardiac arrest, and provides the perspective of patients and relatives, nurses and physicians.

Improving engagement with healthcare in hepatitis C: a randomised controlled trial of a peer support intervention.

BACKGROUND: Peer support can enable patient engagement with healthcare services, particularly for marginalised populations. In this randomised controlled trial, the efficacy of a peer support intervention at promoting successful engagement with clinical services for chronic hepatitis C was assessed. METHODS: In London, UK, potential participants were approached through outreach services for problematic drug use and homelessness. Individuals positive for hepatitis C virus (HCV) after confirmatory testing were randomised using an online service to the intervention (peer support) or standard of care. The primary outcome of interest was successful engagement with clinical hepatitis services. The study was non-blinded. Absolute differences were calculated using a generalised linear model and the results compared to logistic regression. RESULTS: Three hundred sixty-four individuals consented to participate. One hundred one had chronic hepatitis C and were randomised, 63 to receive the intervention (peer support). A successful outcome was achieved by 23 individuals in this arm (36.5%) and seven (18.4%) receiving the standard of care, giving an absolute increase of 18.1% (95% confidence interval 1.0-35.2%, p value = 0.04). This was mirrored in the logistic regression (odds ratio 2.55 (0.97-6.70), p = 0.06). No serious adverse events were reported. CONCLUSIONS: Peer support can improve the engagement of patients with chronic HCV with healthcare services. TRIAL REGISTRATION: ISRCTN24707359 . Registered 19th October 2012.

The ethical conundrum: Conflicting advocacy positions in advanced heart failure therapy.

It is estimated that nearly 6.5 million Americans over the age of 20 suffer from heart failure. Heart failure is the leading cause of hospitalization in patients over 65 years of age, and carries with it a 5-year mortality of nearly 50%. Despite advances in medical therapy, treatment for medically refractory end-stage, advanced heart failure is limited to heart transplant, mechanical circulatory support (MCS), or palliative care only. Patient selection in advanced heart failure (AHF) therapy is complex. Not only are the patients medically complicated, but providers are biased by their individual and collective experience with similar and dissimilar patients. Clinicians caring for AHF patients balance competing clinical and ethical demands, which appropriately leads to professional debate and disagreement. These debates are constructive because they clarify ethical and professional commitments and help to ensure fair and equitable treatment of AHF patients.

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.

Structural justice and nursing: Inpatient nurses' obligation to address social justice needs of patients.

As inpatient nurses spend the majority of their work time caring for patients at the bedside, they are often firsthand witnesses to the devastating outcomes of inadequate preventive healthcare and structural injustices within current social systems. This experience should obligate inpatient nurses to be involved in meeting the social justice needs of their patients. Many nursing codes of ethics mandate some degree of involvement in the social justice needs of society, though how this is to be achieved is not detailed in these general guidelines. Acknowledging an explicit obligation for inpatient nurses to address the social justice issues of their patients would facilitate better overall understanding of social justice issues and reduce preventable admissions. If implementation of such an obligation is done with care, having inpatient nurses participate in justice projects could also mitigate compassion fatigue, allow for better job satisfaction among these nurses, and provide a sense of revitalization in nurses' role as health promoters.

The courage to speak out: A study describing nurses' attitudes to report unsafe practices in patient care.

AIM: To identify workplace factors that influence patient advocacy among registered nurses (RNs) and their willingness to report unsafe practices. BACKGROUND: A prior study by Black illustrated that 34% of respondents were aware of conditions that may have caused patient harm but had not reported the issue. The most common reasons identified for failing to report issues were fear of retaliation and a belief that nothing would prevail from the reports. METHOD: Using Black's study as a model, reporting data were collected from a sample of RNs actively practicing in acute care hospitals. RESULTS: While reasons for reporting are consistent with Black's study, data suggest that a nurse's experiences and working environment are prime factors in their willingness to report patient care issues. CONCLUSION: Although RNs may not have personally experienced workplace retaliation, fear of retaliation when reporting unsafe patient care practices still exists. Nursing leadership's ability to facilitate a culture of safety by proactively addressing unsafe practices fosters a level of comfort for patient advocacy and willingness to report issues. Education, professional associations and existing protection laws are available resources which contribute to organizational support systems. IMPLICATIONS FOR NURSING MANAGEMENT: The findings of this study are consistent with the literature in that organizations need to create a supportive workplace environment whereby, through collective input and leadership, reporting protocols are in place that empower RNs to report unsafe conditions. Direct care nurses are positioned, especially well to identify and speak up regarding conditions that may result in near misses or actual adverse events. Therefore, it is the responsibility, and duty, of nursing management to create and facilitate reporting systems that will be utilized without fear of retaliation and that will contribute to a culture of safety and patient advocacy.

A practice model for rural district nursing success in end-of-life advocacy care.

AIM: The development of a practice model for rural district nursing successful end-of-life advocacy care. BACKGROUND: Resources to help people live well in the end stages of life in rural areas can be limited and difficult to access. District nurse advocacy may promote end-of-life choice for people living at home in rural Australia. The lack of evidence available internationally to inform practice in this context was addressed by exploratory study. METHOD: A pragmatic mixed method study approved by the University Faculty Ethics Committee and conducted from March 2014 to August 2015 was used to explore the successful end-of-life advocacy of 98 rural Australian district nurses. The findings and results were integrated then compared with theory in this article to develop concepts for a practice model. RESULTS: The model illustrates rural district nurse advocacy success based on respect for the rights and values of people. Advocacy action is motivated by the emotional responses of nurses to the end-of-life vulnerability people experience. The combination of willing investment in relationships, knowing the rural people and resources, and feeling supported, together enables district nurses to develop therapeutic emotional intelligence. This skill promotes moral agency in reflection and advocacy action to overcome emotional and ethical care challenges of access and choice using holistic assessment, communication, organisation of resources and empowering support for the self-determination of person-centred end-of-life goals. Recommendations are proposed from the theoretical concepts in the model. LIMITATIONS: Testing the model in practice is recommended to gain the perceptions of a broader range of rural people both giving and receiving end-of-life-care. CONCLUSION: A model developed by gathering and comparing district nursing experiences and understanding using mixed methods and existing theory offers evidence for practice of a philosophy of successful person-centred advocacy care in a field of nursing that lacks specific guidance.

Is there a broader role for independent mental capacity advocates in critical care? An exploratory study.

BACKGROUND: This research explores the current and potential future role of independent mental capacity advocates (IMCAs) in critical care. The Mental Capacity Act (MCA) of 2005 introduced IMCAs as advocates for patients without anyone to represent their best interests, but research suggests that this role is not well understood or implemented. No existing research explores the role of IMCAs in critical care or their potential use when families are judged 'appropriate to act' on the patient's behalf. It is suggested that families may not be best placed to advocate for their sick family member when they themselves are in a state of shock. AIM: To investigate existing levels of knowledge and awareness of the MCA and understanding of the role of IMCAs in critical care as a prelude to considering whether the role of IMCAs might usefully be extended. The concept of 'IMCA clinics' is introduced and explored. DESIGN AND METHODS: A small-scale qualitative study using thematic analysis of 15 interviews across two NHS sites and a survey of IMCA services were undertaken. RESULTS: Some knowledge of the MCA was evident across both study sites, but training on MCA remains unsatisfactory, with confusion about the role of IMCAs and when they should become involved. Overall, participants felt that the broader involvement of IMCAs on a regular basis within critical care could be useful. CONCLUSIONS: There was evidence of good practice when instructing IMCAs, but further work needs to be conducted to ensure that critical care staff are informed about the referral process. It was clear that expanding the role of an advocate warrants further investigation. RELEVANCE TO CLINICAL PRACTICE: Further training on the role of IMCAs within critical care is required, and good practice examples should be shared with other units to improve referral rates to the IMCA service and ensure that vulnerable patients are properly represented.

Public health issues in the 21st century: National challenges and shared challenges for the Maghreb countries.

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.

Peer advocacy in a personalized landscape: The role of peer support in a context of individualized support and austerity.

Whilst personalization offers the promise of more choice and control and wider participation in the community, the reality in the United Kingdom has been hampered by local council cuts and a decline in formal services. This has left many people with intellectual disabilities feeling dislocated from collective forms of support (Needham, 2015). What fills this gap and does peer advocacy have a role to play? Drawing on a co-researched study undertaken with and by persons with intellectual disabilities, we examined what role peer advocacy can play in a context of reduced day services, austerity and individualized support. The findings reveal that peer advocacy can help people reconnect in the face of declining services, problem-solve issues and informally learn knowledge and skills needed to participate in the community. We argue that peer advocacy thus offers a vital role in enabling people to take up many of the opportunities afforded by personalization.

Developing a Policy Brief.

A policy brief is a document that provides a succinct explanation and analysis of a policy issue or problem, together with policy options and recommendations for addressing that issue or problem. This article provides an explanation of what a policy brief is, how it is used, and how it is developed.

The independent living donor advocate: a guidance document from the American Society of Transplantation's Living Donor Community of Practice (AST LDCOP).

The independent living donor advocate (ILDA) serves a mandated and supportive role in the care of the living organ donor, yet qualifications and role requirements are not clearly defined. Guidance comes from Centers for Medicare and Medicaid Services (CMS) Conditions for Transplant Center Participation and interpretive guidelines, Organ Procurement and Transplantation Network (OPTN) Policy and CMS and OPTN site surveys, yet interpretation of regulations varies. Herein, the AST Living Donor Community of Practice (LDCOP) offers seven recommendations to clarify and optimize the ILDA role: (a) the ILDA must have a certain skill set rather than a specific profession, (b) the ILDA must be educated and demonstrate competence in core knowledge components, (c) the ILDA's primary role is to assess components of informed consent, (d) centers must develop a transparent system to define ILDA independence, (e) the ILDA should have a reporting structure outside the transplant center, (f) the ILDA's role should be integrated throughout the donor care continuum, (g) the ILDA role should include a narrow "veto power." We address controversies in ILDA implementation, and offer pathways to maximize benefits and minimize limitations of approaches that may each meet regulatory requirements but confer different practice benefits. We propose a research agenda to explore the impact of the ILDA.

A randomized practical behavioural trial of curriculum-based advocacy training for individuals with traumatic brain injury and their families.

PRIMARY OBJECTIVE: To test whether a curriculum-based advocacy training programme improves advocacy behaviour when compared to a matched group engaged in self-directed advocacy activities. RESEARCH DESIGN: Community-based randomized practical behavioural trial. METHODS AND PROCEDURES: Adults with moderate-severe TBI 1 or more years post-injury and their family members were recruited in Minnesota (4 years), Iowa and Wisconsin (each 3 years) and randomized into a curriculum-based or self-directed advocacy training group. Both groups met on the same day, at separate locations in the same city, once per month for 4 consecutive months. MAIN OUTCOMES AND RESULTS: Pre-post written and video testimony were rated using the Advocacy Behaviour Rating Scale (ABRS). Mean ABRS scores increased after intervention in both groups (curriculum n = 129, self-directed n = 128), but there was no significant difference in this increase between groups. When groups were combined, a significant pre-post improvement in mean ABRS scores was observed. CONCLUSIONS: Curriculum-based advocacy training was not superior to a self-directed approach in improving ABRS scores. A significant improvement in expression of an advocacy message was observed when intervention groups were combined. These findings suggest that bringing together like-minded motivated individuals is more important than programme structure or content in changing advocacy behaviour.