Facilitators and barriers to reducing chemotherapy for early-stage breast cancer: a qualitative analysis of interviews with patients and patient advocates.

BACKGROUND: As the combination of systemic and targeted chemotherapies is associated with severe adverse side effects and long-term health complications, there is interest in reducing treatment intensity for patients with early-stage breast cancer (EBC). Clinical trials are needed to determine the feasibility of reducing treatment intensity while maintaining 3-year recurrence-free survival of greater than 92%. To recruit participants for these trials, it is important to understand patient perspectives on reducing chemotherapy. METHODS: We collected qualitative interview data from twenty-four patients with Stage II-III breast cancer and sixteen patient advocates. Interviews explored potential barriers and facilitators to participation in trials testing reduced amounts of chemotherapy. As the COVID-19 pandemic struck during data collection, seventeen participants were asked about the potential impact of COVID-19 on their interest in these trials. Interviews were audio-recorded and transcribed, and researchers used qualitative content analysis to code for dominant themes. RESULTS: Seventeen participants (42.5%) expressed interest in participating in a trial of reduced chemotherapy. Barriers to reducing chemotherapy included (1) fear of recurrence and inefficacy, (2) preference for aggressive treatment, (3) disinterest in clinical trials, (4) lack of information about expected outcomes, (5) fear of regret, and (6) having young children. Facilitators included (1) avoiding physical toxicity, (2) understanding the scientific rationale of reducing chemotherapy, (3) confidence in providers, (4) consistent monitoring and the option to increase dosage, (5) fewer financial and logistical challenges, and (6) contributing to scientific knowledge. Of those asked, nearly all participants said they would be more motivated to reduce treatment intensity in the context of COVID-19, primarily to avoid exposure to the virus while receiving treatment. CONCLUSIONS: Among individuals with EBC, there is significant interest in alleviating treatment-related toxicity by reducing chemotherapeutic intensity. Patients will be more apt to participate in trials testing reduced amounts of chemotherapy if these are framed in terms of customizing treatment to the individual patient and added benefit-reduced toxicities, higher quality of life during treatment and lower risk of long-term complications-rather than in terms of taking treatments away or doing less than the standard of care. Doctor-patient rapport and provider support will be crucial in this process.

Communication in Pediatric Oncology: A Qualitative Study.

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these communication functions from parental perspectives. METHODS: Semistructured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement. We analyzed interview transcripts using inductive and deductive coding. RESULTS: We identified 8 distinct functions of communication in pediatric oncology. Six of these functions are similar to previous findings from adult oncology: (1) building relationships, (2) exchanging information, (3) enabling family self-management, (4) making decisions, (5) managing uncertainty, and (6) responding to emotions. We also identified 2 functions not previously described in the adult literature: (7) providing validation and (8) supporting hope. Supporting hope manifested as emphasizing the positives, avoiding false hopes, demonstrating the intent to cure, and redirecting toward hope beyond survival. Validation manifested as reinforcing "good parenting" beliefs, empowering parents as partners and advocates, and validating concerns. Although all functions seemed to interact, building relationships appeared to provide a relational context in which all other interpersonal communication occurred. CONCLUSIONS: Parent interviews provided evidence for 8 distinct communication functions in pediatric oncology. Clinicians can use this framework to better understand and fulfill the communication needs of parents whose children have serious illness. Future work should be focused on measuring whether clinical teams are fulfilling these functions in various settings and developing interventions targeting these functions.

Surgeon as Double Agent: Perception of Conflicting Expectations of Patient Care and Stewardship of Resources.

BACKGROUND: Physicians must satisfy 2 competing expectations: advocate for patients and serve as stewards of resources. No guidelines exist for surgeons on resolving this conflict. We surveyed surgeons' perceptions about these dual obligations. STUDY DESIGN: We conducted our study at 2 large university hospitals in 3 distinct steps, each built on the previous one. First, we surveyed 40 surgery residents and medical students using a 10-question assessment tool as the quantitative portion of our analysis. Next, a focus group of attending surgeons was surveyed to identify themes for the qualitative part of our study. Based on these, 5 attending surgeons from varying specialties were interviewed in a semi-structured format. We used the Wilcoxon signed rank test for quantitative analysis and content analysis to report our qualitative findings. RESULTS: Students and residents did not think that they faced resource allocation decisions; however, they observed attending surgeons face them regularly (p = 0.0003). Attending surgeons from various specialties agreed that they thought they were obligated to both provide excellent care and serve as a steward of resources. All surgeons agreed these obligations can conflict. Individual practices varied with all erring on the side of patient care. Concern about being an outlier in one's section was a greater motivator to alter practice than was fear of litigation. No surgeon thought that patients had an adequate understanding of surgeons' dual agency. CONCLUSIONS: Surgeons balance the responsibilities of patient care and stewardship of resources with great variability. Diverse practices likely add to inequalities in healthcare delivery and increase mistrust. Surgeons' social contract with patients calls for transparent strategies to address their dual agency.

Advocacy: The Pivotal Role of Oncology Nurses.

Advocacy, an important component of nursing professional practice, is pivotal to ensuring that nurses' experience and insight influence public policy. Understanding how to become engaged and receive training to inform that process can support nurses' professional development. Such engagement ensures that nurses' unique insights inform the policies that affect patient care and professional practice in oncology and beyond.

Expertise, advocacy and activism: A qualitative study on the activities of prostate cancer peer support workers.

Peer support workers are now working with patients in a variety of settings, coming into close contact and even work alongside health professionals. Despite the potentially influential position peer support workers hold in relation to those engaged in support activities, their role, duties and their relationship to peers and health professionals lack clarity and is often defined by other actors. This study explores how peer support workers interpret and define the activities, responsibilities and knowledge associated with their work. Using methods of membership categorisation analysis, we analysed interview materials generated by conducting individual semi-structured interviews during the autumn of 2016 with prostate cancer peer support workers (n = 11) who currently volunteer as support workers in Finland. Although the peer support workers acknowledged the psychosocial aspects of the work, we argue that their interpretations extend far beyond this and encompass expertise, advocacy and activism as central features of their work. These can be used to strengthen their position as credible commentators and educators on issues relating to cancer and men's health; raise awareness and represent the 'patient's voice' and attempt to influence both policy and clinical practice. These findings suggest that by categorising their work activities in different ways, voluntary sector actors such as peer support workers can attempt to portray themselves as legitimate authorities on a range of issues and influence decision-making ranging from individual level treatment decisions all the way to health policy.

Health advocacy and primary health care: evidence for nursing / Defensa de la salud y atención primaria de salud: evidencias para enfermeira / Advocacia em saúde e atenção primária à saúde: evidências para enfermagem

ABSTRACT Objectives: to analyze nursing actions involving health advocacy in the context of primary health care and the consolidation of this right to health. Methods: this is an integrative literature review with content analysis of the results on health advocacy and its relationship with nursing in the context of primary health care. Results: the content analysis of the seven selected studies resulted in two thematic categories: "Right to health - a complex and progressive consolidation movement in Brazil" and "Advocacy in health and nursing". Conclusions: despite the difficulties in defining the concept of health advocacy, nurses, in their practice, act with innovative alternatives to daily conflicts, exercising the users' right to health in their relationships with health team members and the community.

RESUMEN Objetivos: analizar las acciones de enfermería que involucran la defensa de la salud en el contexto de la atención primaria de salud y la consolidación de este derecho de salud. Métodos: esta es una revisión integrativa de la literatura con análisis de contenido de los resultados sobre la defensa de la salud y su relación con la enfermería en el contexto de la atención primaria de salud. Resultados: del análisis de contenido de los siete estudios seleccionados se originaron dos categorías del tema: "Derecho de salud: un movimiento complejo y progresivo de consolidación en Brasil" y "Defensa en salud y enfermería". Conclusiones: a pesar de las dificultades para definir el concepto de defensa de la salud, las enfermeras, en su práctica, actúan con alternativas innovadoras a los conflictos diarios, practicando el derecho de los usuarios a la salud en sus relaciones con miembros del equipo de salud y la comunidad.

RESUMO Objetivos: analisar as ações de enfermagem que envolvem advocacia em saúde no âmbito da atenção primária à saúde e a consolidação deste direito à saúde. Métodos: trata-se de um estudo de revisão integrativa da literatura com análise de conteúdo dos resultados sobre a advocacia em saúde e sua relação com a enfermagem no contexto de atenção primária à saúde. Resultados: da análise de conteúdo dos sete estudos selecionados, originaram-se duas categorias do tema: "Direito à saúde - um movimento complexo e progressivo de consolidação no Brasil" e "Advocacia em saúde e Enfermagem". Conclus ões: apesar das dificuldades de definição do conceito de advocacia em saúde, os enfermeiros, em sua prática, atuam com alternativas inovadoras aos conflitos diários, exercendo o direito à saúde dos usuários em suas relações com membros da equipe de saúde e a comunidade.

Nurses defending the autonomy of the elderly at the end of life / El enfermero en la defensa de la autonomía del anciano al final de la vida / O enfermeiro na defesa da autonomia do idoso na terminalidade da vida

ABSTRACT Objective: to understand how nurses deal with the elderly's autonomy at the end of life. Method: qualitative, exploratory study, guided by the Grounded Theory. Ten nurses, eight doctors and 15 nursing technicians were interviewed between November 2016 and May 2017 at a university hospital in Rio de Janeiro/Brazil. Results: nurses deal with the elderly's autonomy in compliance with the code of ethics and exercise leadership in actions and interactions to defend this right, evaluating, guiding and listening to the preferences of the elderly; interacting with the family; and sharing information with the health team. Final considerations: the elderly's autonomy must be ensured in care planning, based on patient-centered communication and developed in the interaction among agents involved in care. The discussion on "Living Wills" Health Care Directives and principles of palliative care must be encouraged.

RESUMEN Objetivo: comprender la forma en que los enfermeros se ocupan de la autonomía del anciano en relación con el fin de la vida. Método: estudio cualitativo, exploratorio, guiado por la Teoría Fundamentada en los Datos. Diez enfermeros, ocho médicos y 15 técnicos de enfermería fueron entrevistados entre noviembre de 2016 y mayo de 2017, en un hospital universitario, en Río de Janeiro/Brasil. Resultados: los enfermeros lidian con la autonomía del anciano en atención al código de ética y ejercen el liderazgo en las acciones e interacciones para defender este derecho, evaluando, orientando y escuchando las preferencias de los ancianos; interactuando con la familia; y compartiendo información con el equipo de salud. Consideraciones finales: la autonomía de los ancianos debe ser asegurada en la planificación asistencial, teniendo como base la comunicación centrada en el paciente y desarrollada en el proceso interacional entre los agentes involucrados en el cuidado. Es necesario fomentar la discusión sobre las Diretivas Antecipadas de Vontades (Directivas Anticipadas de Voluntades) y sobre los principios de los cuidados paliativos.

RESUMO Objetivo: compreender a forma como os enfermeiros lidam com a autonomia do idoso na terminalidade da vida. Método: estudo qualitativo, exploratório, guiado pela Teoria Fundamentada nos Dados. Dez enfermeiros, oito médicos e 15 técnicos de enfermagem foram entrevistados entre novembro de 2016 e maio de 2017, em um hospital universitário, no Rio de Janeiro/Brasil. Resultados: os enfermeiros lidam com a autonomia do idoso em atendimento ao código de ética e exercem a liderança nas ações e interações para defender este direito, avaliando, orientando e ouvindo as preferências dos idosos; interatuando com a família; e compartilhando informações com a equipe de saúde. Considerações finais: a autonomia dos idosos deve ser assegurada no planejamento assistencial, tendo como base a comunicação centrada no paciente e desenvolvida no processo interacional entre os agentes envolvidos no cuidado. É preciso fomentar a discussão sobre as Diretivas Antecipadas de Vontades e sobre os princípios dos cuidados paliativos.

Teaching Patients with Advanced Cancer to Self-Advocate: Development and Acceptability of the Strong Together™ Serious Game.

OBJECTIVE: Serious games are a growing form of psychoeducation, although few studies have evaluated serious games for patients with advanced cancer. The purpose of this study was to develop and assess the initial acceptability of a serious game to teach women with advanced cancer self-advocacy skills, including communication, decision-making, and social connectivity, to improve their quality of life with cancer. MATERIALS AND METHODS: We conducted a multistage, user-centered codesign process to develop the content of the game that was consistent with our work on how patients self-advocate and patients' preferences for the game. First, we conducted an open pilot study of a mock paper version of the game by assessing patients' interest in the serious game. Second, we organized a diverse expert panel to develop the serious game with a company, Simcoach Games, using patient-centered design approaches with multiple rounds of patient feedback. Finally, we performed acceptability testing of the game by asking patients their perceptions of the game's appropriateness, realism, and entertainment. RESULTS: During the three stages of game development, patients reported that the serious game was appropriate, informative, useful, and relevant to their challenges as patients with cancer. Suggestions for improvement included tailoring the game to a patient's specific situation, providing the game early in treatment, and including caregivers and other patients in the game play. CONCLUSION: The Strong Together™ serious game demonstrates the potential to assist patients in advocating for their needs and priorities. Future work will use patient suggestions to improve the game before efficacy testing.

The spectrum of end of life care: an argument for access to medical assistance in dying for vulnerable populations.

Medical assistance in dying (MAiD) was legalized by the Supreme Court of Canada in June 2016 and became a legal, viable end of life care (EOLC) option for Canadians with irremediable illness and suffering. Much attention has been paid to the balance between physicians' willingness to provide MAiD and patients' legal right to request medically assisted death in certain circumstances. In contrast, very little attention has been paid to the challenge of making MAiD accessible to vulnerable populations. The purpose of this paper was to examine the extant literature and resources that are available on the provision of MAiD in Canada. We found that the provision of EOLC in Canada offers insufficient access to palliative and EOLC options for Canadians and that vulnerable Canadians experience disproportional barriers to accessing these already limited resources. Consequently, we argue that palliative care, hospice care and MAiD must be considered a spectrum of EOLC that is inclusive and accessible to all Canadians. We conclude by imploring Canadian healthcare professionals, policy makers and legislators to consider MAiD as a viable EOLC option for all Canadians.

Health advocacy by nurses in the Family Health Strategy: barriers and facilitators / Acción política de enfermeros en Estrategia Salud de la Familia: barreras y facilitadores / Advocacia em saúde por enfermeiros na Estratégia Saúde da Família: barreiras e facilitadores

ABSTRACT Objective: Identify the barriers and facilitators of health advocacy to users delivered by nurses from the Family Health Strategy. Method: Qualitative study carried out with nurses from the Family Health Strategy of a city in the south of Brazil. Study participants were 15 nurses, who were interviewed. The content of the interviews was recorded, transcribed and analyzed in the light of the discursive text analysis. Results: Two categories emerged, one about the lack of organization at the workplace, bureaucracy and limitations to professional work in health environments, and another about the facilitating aspects to exercise advocacy both individually and collectively. Conclusion: When nurses, provided with technical, scientific and relational knowledge, are empowered to make decisions, they are not only supported by other professionals at work but also develop actions of health advocacy to users, thus qualifying the care delivered.

RESUMEN Objetivo: Identificar las barreras y facilitadores de la acción política en salud de los usuarios por parte de enfermeros de Estrategia Salud de la Familia. Método: Estudio cualitativo realizado con enfermeros de Estrategia Salud de la Familia en ciudad del Sur de Brasil. Participaron 15 enfermeros mediante entrevistas grabadas, transcriptas y analizadas por análisis textual discursivo. Resultados: Surgieron dos categorías, una discurriendo sobre falta de organización del trabajo, la burocracia y las limitaciones de actuación profesional en ámbitos sanitarios, y otra sobre aspectos facilitadores para el ejercicio de la acción política de modo colectivo e individual. Conclusión: Cuando el enfermero, poseedor de conocimientos técnicos, científicos y de relación, desarrolla su autonomía para toma de decisiones, contando con el apoyo de otros colegas profesionales. Consigue desarrollar acciones políticas en salud para los usuarios, calificando así la atención brindada.

RESUMO Objetivo: Identificar as barreiras e facilitadores da advocacia em saúde dos usuários por enfermeiros da Estratégia Saúde da Família. Método: Estudo qualitativo realizado com enfermeiros da Estratégia Saúde da Família em uma cidade no sul do Brasil. Participaram 15 enfermeiros mediante uso de entrevistas gravadas, transcritas e analisadas à luz da análise textual discursiva. Resultados: Emergiram duas categorias, uma discorrendo sobre a falta de organização do trabalho, da burocracia e das limitações para atuação profissional nos ambientes de saúde e outra sobre os aspectos facilitadores para o exercício da advocacia de forma individual e coletivamente. Conclusão: Quando o enfermeiro, imbuído dos saberes técnicos, científicos e de relacionamento, desenvolve sua autonomia na tomada de decisões, além de contar com o apoio de outros profissionais no trabalho, consegue desenvolver ações de advocacia em saúde aos usuários e, assim, qualifica o cuidado prestado.

Symptom Burden and Self-Advocacy: Exploring the Relationship Among Female Cancer Survivors

BACKGROUND: Although patient self-advocacy is a critical component of patient-centered care, the association between symptom burden and self-advocacy has received little attention. 
. OBJECTIVES: This analysis evaluates the degree to which self-advocacy is associated with symptom burden among women with a history of cancer. 
. METHODS: Participants completed online or paper questionnaires. Descriptive statistics and ordinary least squares regression models were used to analyze the association between the three dimensions of self-advocacy and two dimensions of symptom burden. FINDINGS: Participants reported moderate levels of symptom burden. Fatigue, disturbed sleep, and memory problems were most common. Informed decision making was positively associated with symptom burden and participants' burden across the three most severe symptoms. Effective communication was negatively associated with total symptom burden and the degree to which symptoms interfered with daily life.

Ombudsman's experience in Psychosocial Care Centers for alcohol/drugs / La experiencia de la audiencia en un Centro de Atención Psicosocial alcohol/drogas / A experiência da ouvidoria em um Centro de Atenção Psicossocial álcool/drogas

ABSTRACT Objective: The objective of the study was to analyze criticisms, compliments and suggestions of users, family and workers, placed in an Ombudsman of a Centro de Atenção Psicossocial para Álcool e outras Drogas (Psychosocial Care Centers for Alcohol and Other Drugs- CAPS ad). Method: A study carried out in the CAPS ad of Macapá-AP from August to December 2016, through the thematic content analysis of the files deposited in the ombudsman, recently introduced in the service, containing criticisms, compliments and suggestions from users, family members, and CAPS ad. Results: It was observed the dissatisfaction with the infrastructure of the CAPS ad, and with the relationships built between users and professionals, in addition, suggestions were given of workshops, and improvement in the development of the Projeto Terapêutico Singular (freely translated as Unique Therapeutic Project). Final considerations: It is concluded that the multidisciplinary team needs to put in practice the real psychosocial care in the service, and that the management helps in the improvement of the service's place, and in the proposal of qualifications to this team.

RESUMEN Objetivo: El objetivo del estudio fue analizar las críticas, elogios y sugerencias de los usuarios, familiares y trabajadores colocados en la Audiencia de un Centro de Atención Psicosocial para Alcohol y otras drogas (CAPS ad). Método: Estudio realizado en el CAPS ad de la ciudad Macapá, estado de Amapá desde el agosto hasta el diciembre 2016, a través del análisis temático de contenido de los archivos depositados en la audiencia, recién implantada en el servicio, conteniendo críticas, elogios y sugerencias de usuarios, familiares, y trabajadores del CAPS ad. Resultados: Se observó la insatisfacción con la infraestructura del CAPS ad, y con las relaciones construidas entre usuarios y profesionales. Además, se presentaron sugerencias de talleres, y de mejora en la construcción del proyecto terapéutico singular. Consideraciones finales: Se concluye sobre la necesidad de que el equipo multidisciplinario ponga en práctica la real atención psicosocial en el servicio, y que la gestión auxilie en la mejora del local del servicio, y en la proposición de capacitaciones a ese equipo.

RESUMO Objetivo: O objetivo do estudo foi analisar as críticas, elogios e sugestões dos usuários, familiares e trabalhadores, colocadas na Ouvidoria de um Centro de Atenção Psicossocial para Álcool e outras drogas (CAPS ad). Método: Estudo realizado no CAPS ad de Macapá-AP no período de agosto a dezembro de 2016, por meio da análise temática de conteúdo das fichas depositadas na ouvidoria, recém implantada no serviço, contendo críticas, elogios e sugestões de usuários, familiares, e trabalhadores do CAPS ad. Resultados: Observou-se a insatisfação com a infraestrutura do CAPS ad, e com as relações construídas entre usuários e profissionais, além disso, foram apresentadas sugestões de oficinas, e de melhora na construção do Projeto Terapêutico Singular. Considerações finais: Conclui-se sobre a necessidade de a equipe multidisciplinar colocar em prática a real atenção psicossocial no serviço, e que a gestão auxilie na melhora do local do serviço, e na proposição de capacitações à essa equipe.

Hospice Palliative Care Volunteers as Program and Patient/Family Advocates.

The objectives of this study were to examine (1) the extent to which hospice palliative care volunteers are involved in program and patient/family advocacy, (2) volunteers' willingness to engage in program and patient/family advocacy, and (3) volunteers' perceived needs for training on how to be an effective advocate. Thirty-four hospice palliative care volunteers responded to the survey developed for this study. The majority of the volunteers surveyed consider themselves advocates for their programs and many of those, who have not already done so, would be willing to promote their program (eg, give a community presentation, talk to local media) if asked. Half of the volunteers were aware of unmet needs of the patients/families they supported, and just over one-third wanted to advocate on behalf of their patients/families but did not know what to do or where to go. Recommendations for volunteer training are made.

Patient representatives' views on patient information in clinical cancer trials.

BACKGROUND: Patient enrolment into clinical trials is based on oral information and informed consent, which includes an information sheet and a consent certificate. The written information should be complete, but at the same time risks being so complex that it may be questioned if a fully informed consent is possible to provide. We explored patient representatives' views and perceptions on the written trial information used in clinical cancer trials. METHODS: Written patient information leaflets used in four clinical trials for colorectal cancer were used for the study. The trials included phase I-III trials, randomized and non-randomized trials that evaluated chemotherapy/targeted therapy in the neoadjuvant, adjuvant and palliative settings. Data were collected through focus groups and were analysed using inductive content analysis. RESULTS: Two major themes emerged: emotional responses and cognitive responses. Subthemes related to the former included individual preferences and perceptions of effect, while subthemes related to the latter were comprehensibility and layout. Based on these observations the patient representatives provided suggestions for improvement, which largely included development of future simplified and more attractive informed consent forms. CONCLUSIONS: The emotional and cognitive responses to written patient information reported by patient representatives provides a basis for revised formats in future trials and add to the body of information that support use of plain language, structured text and illustrations to improve the informed consent process and thereby patient enrolment into clinical trials.

Informing or Exploiting? Public Reponses to Giuliana Rancic's Health Narrative.

Popular entertainment journalist Giuliana Rancic has shared her struggles with pregnancy loss, infertility, and breast cancer in an array of public forums. In this study, we analyzed online comments responding to public discourses surrounding Rancic's revelations, including her miscarriage and fertility treatments, her breast cancer diagnosis, and her decision to undergo a double mastectomy. Our goal was to explore how the public framed Rancic's health challenges. Using a narrative lens, we argue that online comments reveal the tensions that celebrities like Rancic must manage as they contend with public scrutiny of their stories. Online commenters in this study framed Rancic's narrative as a privileged vantage point in which she exploited her health struggles for personal and financial gain. Our analysis of these comments also demonstrates how Rancic's narrative exists in concert with other discourses that challenge and disrupt her own account of events. The examination of these mediated discourses has implications for understanding the role of celebrity experiences in personal and public conversations about health.

Patient Education vs. Patient Experiences of Self-advocacy: Changing the Discourse to Support Cancer Survivors.

A growing emphasis on patient self-advocacy has emerged in the public discourse on cancer survivorship. This discourse shapes patients' conceptualizations about self-advocacy and in turn influences their health care attitudes and behaviors. The purpose of this discourse analysis is to explore the language of self-advocacy by comparing a published self-advocacy guide with the lived experiences of women with ovarian cancer. Data sources include (1) a self-advocacy patient education guide published by the National Coalition for Cancer Survivorship and (2) transcripts of focus groups conducted with ovarian cancer survivors. Discourse analysis techniques were used to take a close look at the language used by both to uncover the meaning each group ascribed to self-advocacy. Challenges and inconsistencies were noted between the patient education guide and transcripts including viewing self-advocacy as a skill set to assert one's needs as opposed to a means by which to preserve a positive attitude and maintain a trusting relationship with health care providers, respectively. Some women saw themselves as self-advocates yet struggled to locate relevant health information and hesitated to upset their relationship with their health care providers. This analysis highlights tensions between the discourses and points to ways in which patient education materials can be adjusted to support cancer survivors in advocating for their needs according to their unique situations and preferences.

Autopoiese e reforma psiquiátrica

Em autopoise e reforma psiquiátrica Roberto Tykanori conseguiu integrar sua experiência política e clínica com erudição filosófica. O livro analisa a reforma psiquiátrica e a constituição da política em saúde mental, no Brasil, de um modo inovador e instigante. O conceito orientador de sua investigação é o de autopoiese, a capacidade dos seres humanos de produzirem instituições e também a sua própria existência.

The Psychosocial and Independent Living Donor Advocate Evaluation and Post-surgery Care of Living Donors.

Solid organ transplantation as a treatment for end stage organ failure has been an accepted treatment option for decades. Despite advances in medicine and technology, and increased awareness of organ donation and transplantation, the gap between supply and demand continues to widen. Living donation has been an option that has increased the number of transplants despite the continued shortage of deceased organs. In the early 2000s live donor transplantation reached an all-time high in the United States. As a result, a consensus meeting was convened in 2000 to increase the oversight of living donor transplantation. Both the Centers for Medicare and Medicaid Services and the United Network for Organ Sharing developed regulations that transplant programs performing live donor transplantation. These regulations and guidelines involve the education, evaluation, informed consent process and living donor follow-up care. Two areas in which had significant changes included the psychosocial and the independent living donor advocate (ILDA) evaluation. The purpose of this paper was to outline the current regulations and guidelines associated with the psychosocial and ILDA evaluation as well as provide further recommendations for the administration of a high quality evaluation of living donors. The goals and timing of the evaluation and education of donors; qualifications of the health care providers performing the evaluation; components of the evaluation; education provided to donors; documentation of the evaluation; participation in the selection committee meeting; post-decline and post-donation care of donors is described. Caveats including the paired donor exchange programs and non-directed and directed donation are also considered.

[Euthanasia and physician-assisted suicide : Attitudes of physicians and nurses]. / Tötung auf Verlangen und assistierter Suizid : Einstellung von Ärzten und Pflegekräften.

BACKGROUND: The current debate about end-of-life decisions in Germany focuses on physician-assisted suicide (PAS). However, there is only limited information available on physicians' attitudes towards euthanasia or PAS, and no data on nurses' attitudes. OBJECTIVES: The aim is to explore attitudes of physicians and nurses with a special interest in palliative care and pain medicine using a case-related questionnaire. METHODS: An anonymous questionnaire, consisting of eight questions, was distributed to all participants of a palliative care congress and a pain symposium. The questions focused on two scenarios: (1) a patient with an incurable fatal illness, (2) a patient with an incurable but nonfatal illness. The question was: Should euthanasia or physician-assisted suicide (PAS) be allowed. In addition, the participants were asked what they wanted for themselves if they were the patient concerned. RESULTS: A total of 317 questionnaires were analyzed; the return rate was 70 %. The general support for euthanasia and PAS was high: 40.5 % supported euthanasia in case of a fatal illness ("definitely…", "probably should be allowed"), 53.5 % supported PAS. The support decreased in case of a nonfatal illness; however, it increased when the participants were asked about their attitudes if they were the patient concerned. Nurses were more open towards euthanasia and PAS. In physicians the rejection of PAS was directly related to a higher level of qualification in the field of palliative care. CONCLUSION: The fact that nurses had a more positive attitude towards euthanasia and PAS and that all respondents accepted life-ending acts for themselves more than for their patients hints to still existing severe deficits in Germany.

Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms.

African-American women experience disproportionately adverse outcomes relative to non-Latina White women after an abnormal mammogram result. Research has suggested medical advocacy and staff support may improve outcomes among this population. The purpose of the study was to understand reasons African-American women believe medical advocacy to be important and examine if and how staff can encourage and be supportive of medical advocacy. A convenience-based sample of 30-74-year-old women who self-identified as African-American/Black/of African descent and who had received an abnormal mammogram result was recruited from community-based organizations, mobile mammography services, and the local department of health. This qualitative study included semi-structured interviews. Patients perceived medical advocacy to be particularly important for African-Americans, given mistrust and discrimination present in medical settings and their own familiarity with their bodies and symptoms. Respondents emphasized that staff can encourage medical advocacy through offering information in general in a clear, informative, and empathic style. Cultural competency interventions that train staff how to foster medical advocacy may be a strategy to improve racial disparities following an abnormal mammogram.