Oncology nursing specialty across Latin America: struggle and achievements past and present.

BACKGROUND: Latin America (LATAM) is a large region from Mexico to southern Patagonia in Chile and includes most islands in the Caribbean where Spanish is an official language. Efforts to address nursing specialization in the care of patients with cancer throughout the cancer continuum are described in narratives of oncology nursing struggles and achievements from eight Latin American countries. METHODS: Contributions by authors from Mexico, Costa Rica, Ecuador, Brazil and Chile are complemented by interview data (in Spanish by a bilingual medical anthropologist) to share the history and present status in the Dominican Republic, Peru and Argentina. RESULTS: We present stories of the pioneers of oncology nursing and a brief description of health systems in several of the included countries to show the disparate approaches towards cancer control and the context in which the oncology nurses work. We include key demographics and cancer data from the highlighted countries. We follow with descriptions of the formation and importance of oncology nursing associations/societies and share the history of oncology nursing education efforts, scopes of practice and recommendations for improvement in oncology nursing. CONCLUSIONS: Despite the challenges, oncology nurse leaders across LATAM are determined to raise the standards of care with structured specialization education/training, and to create advanced practice oncology nursing roles. It is critical that the achievements of oncology nurses are nationally acknowledged and appropriately compensated by governments and national and local authorities. The future is now for oncology nursing to be recognized as a critical specialized healthcare workforce to effectively address the growing threat of cancer and to ensure optimal control of this public health crisis across the region.

Development and Implementation of Educational Material by Nurses for Parents/Caregivers of Children With Cancer: A Peruvian National Study.

Background: Education for parents and caregivers of children with cancer is one of the fundamental roles of nurses to avoid complications, provide quality care, promote adherence to treatment and maintain basic standards of care. This study aimed to design educational material for parents and caregivers of children with cancer in Peru on general information about childhood cancer and its care. Method: Within the framework of the WHO Global Initiative for Childhood Cancer in Peru, a multicenter working group was convened by the Peruvian Ministry of Health. A comprehensive needs assessment of parents and caregivers of children with cancer was performed through a survey in June and July 2020. The survey was conducted online (via Google Forms) and in person at nine hospitals to examine the preferred method of delivery and content of information. Results: Based on the findings from the parent needs assessment, a national nursing working group developed Spanish-language audiovisual materials (i.e., diagnosis and treatment videos for nurses to educate parents and caregivers). A total of 365 parents and caregivers were included. Most respondents (56.9%) were parents of children receiving treatment. Main topics were childhood cancer overview and side effects (85%), food and nutrition (75%), and palliative care (67%); most (70.9%) preferred information through talks and videos (64.7%). Twenty-three videos were developed with support by the Pan American Health Organization and the Ministry of Health. Discussion: Assessing the educational needs of parents and caregivers of children with cancer provides a starting point in the design of targeted strategies.

Survivors of childhood cancer in Latin America: Role of foundations and peer groups in the lack of transition processes to adult long-term follow-up.

BACKGROUND: Over the last decade, the population of childhood cancer survivors has rapidly increased in Latin America, opening a long chapter of challenges for healthcare providers in these countries to provide follow-up and adult care. AIM: In the process of exploring childhood cancer parent and patient engagement in resource-limited settings, we highlight the challenges faced by Latin American survivors from El Salvador, Mexico, and Peru as they transitioned from receiving cancer treatment to life as a cancer survivors. METHODS AND RESULTS: Focus group discussions and interviews were performed as part of a larger qualitative study involving 10 low and middle-income countries in four continents regarding patient and caregiver engagement in childhood cancer treatment. We present the results of the Latin-American survivors and their experiences finishing treatment and life outside the pediatric oncology follow-up system. Themes regarding a) losing eligibility for pediatric surveillance and care, b) the importance of peer survivors, and c) the need for giving back were part of their stories. CONCLUSION: We suggest that given the lack of organized support from healthcare systems and providers for survivors' proper transition into adult-centered care, foundations and non-governmental organizations can provide transitional support, offer space for guidance/information, and work towards collaboration among systems for future integrated programs.

Parent Engagement and Agency in Latin American Childhood Cancer Treatment: A Qualitative Investigation.

PURPOSE: Parent engagement in childhood cancer treatment is central for positive outcomes. Aspects of fruitful engagement have been described mainly in high-income countries (HICs) where family autonomy is valued, health care provider-patient relationships are less hierarchical, and active family participation in health care is welcomed. In many low- and middle-income countries (LMICs), these aspects are not always valued or encouraged. We explored childhood cancer treatment engagement in Latin America as part of a larger engagement study in 10 LMICs worldwide. METHODS: A qualitative investigation was conducted with parents (with the exception of one grandmother and two aunts in loco parentis; n = 21) of children with cancer in El Salvador, Peru, and Mexico. Participants were recruited by two Childhood Cancer International foundations and two local hospitals. A pediatric oncology psychologist and a medical anthropologist (experienced, native Latin Americans researchers) conducted focus-group discussions and in-depth interviews that were recorded and transcribed, and analyzed data. RESULTS: Parents in the three countries actively engage in their child's treatment, despite challenges of communicating effectively with health care staff. Hierarchical health care provider relationships and generalized socioeconomic disparities and cultural diversity with health care staff notwithstanding, parents find ways to navigate cancer treatment by exerting their agency and exploiting resources they have at hand. CONCLUSION: In Latin America, engagement materializes in ways that are not necessarily reflected in existing literature from HICs and, thus, engagement may seem nonexistent. Health care teams' recognition of parents' substantial sacrifices to adhere to complex demands as treatment engagement, may positively impact the children's (and family's) quality of life, treatment experience, adherence, and posttreatment circumstances.

Challenges to the improvement of Colombian medical brigades aimed at the diagnosis of congenital heart disease: A qualitative approach.

Qualitative research of brigades and the family experience of congenital heart disease is of current interest and has been previously neglected. This study aimed to explore the social factors conditioning outcomes of paediatric cardiology care in the setting of Colombian medical brigades and to identify feasible strategies to improve the experience of the beneficiary populations. Participants were selected using purposeful sampling. Semi-structured interviews were conducted with members of logistic and health care teams, caregivers and custodians of beneficiary children of the Programme. The data collected provided an understanding of the health culture, social background, household and intrafamily dynamics. The outcomes of the Programme are influenced by sociocultural dynamics such as communication gaps and the socioeconomic status of the beneficiary populations. Findings may be specific to brigades, but also cross-relevant to any family experience of a new diagnosis of Congenital Heart Disease (CHD) communicating with healthcare professionals. It is important to foresee the role and further development of the Programme. Recommendations are provided suggesting innovative work by means of telemedicine and other sociocultural measures to reduce healthcare inequity and strengthen comprehensive healthcare programmes.

[Pediatric cardiology health brigades: from medical triage to social triage]. / Brigadas de salud en cardiología pediátrica: del triaje médico al triaje social.

This article explores the sociocultural aspects of a program of pediatric cardiology health brigades that provides care to children from low-income populations in peripheral regions of Colombia. We analyzed the brigades as a humanitarian strategy to close the gaps of inequity in access to health care, and as a particular context of the medical encounter, the experience of heart disease and the definition of care trajectories. Based on ethnographic observation of brigades and interviews with families receiving care and with health personnel, carried out in 2016 in five different cities, we looked at the dynamics that shape the medical encounter and questioned the mechanisms (medical and social) through which it is evaluated and decided which families can access care in Bogota. We conclude that the brigades, as initiatives that continue to be anchored in humanitarism instead of contributing to the transformation of the conditions that generate health inequities, reproduce and exacerbate such inequities by selecting which lives receive priority to be saved.

Este artículo explora aspectos socioculturales de un programa de brigadas de cardiología pediátrica para la atención de menores de poblaciones de escasos recursos que habitan en regiones periféricas de Colombia. Problematizamos las brigadas como estrategia humanitaria para cerrar las brechas de inequidad en el acceso a la atención en salud, y como contexto particular para el encuentro médico, la experiencia de la cardiopatía y la definición de las trayectorias de cuidado. A partir de la observación etnográfica de brigadas y de entrevistas a familias asistentes y personal de salud, realizadas durante el año 2016 en cinco ciudades diferentes, indagamos en las dinámicas que configuran el encuentro médico y cuestionamos los mecanismos (médicos y sociales) mediante los cuales se evalúa y decide qué familias pueden acceder a atención médica especializada en Bogotá. Se concluye que las brigadas, al ser iniciativas que continúan anclándose en el humanitarismo, en lugar de contribuir a la transformación de las condiciones que generan inequidades en salud acaban reproduciéndolas y exacerbándolas en la medida que seleccionan las vidas con prioridad para ser salvadas.

Brigadas de salud en cardiología pediátrica: del triaje médico al triaje social / Pediatric cardiology health brigades: from medical triage to social triage

RESUMEN Este artículo explora aspectos socioculturales de un programa de brigadas de cardiología pediátrica para la atención de menores de poblaciones de escasos recursos que habitan en regiones periféricas de Colombia. Problematizamos las brigadas como estrategia humanitaria para cerrar las brechas de inequidad en el acceso a la atención en salud, y como contexto particular para el encuentro médico, la experiencia de la cardiopatía y la definición de las trayectorias de cuidado. A partir de la observación etnográfica de brigadas y de entrevistas a familias asistentes y personal de salud, realizadas durante el año 2016 en cinco ciudades diferentes, indagamos en las dinámicas que configuran el encuentro médico y cuestionamos los mecanismos (médicos y sociales) mediante los cuales se evalúa y decide qué familias pueden acceder a atención médica especializada en Bogotá. Se concluye que las brigadas, al ser iniciativas que continúan anclándose en el humanitarismo, en lugar de contribuir a la transformación de las condiciones que generan inequidades en salud acaban reproduciéndolas y exacerbándolas en la medida que seleccionan las vidas con prioridad para ser salvadas.

ABSTRACT This article explores the sociocultural aspects of a program of pediatric cardiology health brigades that provides care to children from low-income populations in peripheral regions of Colombia. We analyzed the brigades as a humanitarian strategy to close the gaps of inequity in access to health care, and as a particular context of the medical encounter, the experience of heart disease and the definition of care trajectories. Based on ethnographic observation of brigades and interviews with families receiving care and with health personnel, carried out in 2016 in five different cities, we looked at the dynamics that shape the medical encounter and questioned the mechanisms (medical and social) through which it is evaluated and decided which families can access care in Bogota. We conclude that the brigades, as initiatives that continue to be anchored in humanitarism instead of contributing to the transformation of the conditions that generate health inequities, reproduce and exacerbate such inequities by selecting which lives receive priority to be saved.

Testigos modestos y poblaciones invisibles en la cobertura de la genética humana en los medios de comunicación colombianos / Modest witnesses and invisible populations in media coverage of human genetics in Colombia / Testemunhas modestas e populações invisíveis na cobertura da genética humana na mídia colombiana

En este artículo exploramos cómo los medios de comunicación colombianos configuran la práctica de la genética humana, reproduciendo ciertos discursos estandarizados sobre ciencia que se encuentran atravesados por el género y la raza. Para este fin llevamos a cabo un análisis etnográfico de la cobertura de la genética humana (poblacional y forense) en dos de los medios de mayor penetración en el país en los periodos de 1992-2006 (periódico) y 2009-2010 (periódico y noticiero). Nuestro argumento es que por una parte, los medios de comunicación presentan a la ciencia genética como única/uniforme/objetiva/neutra/heroica. Por otro lado, presenta sujetos que son simultáneamente marcados y desmarcados en términos de raza, género, clase y geografía. Concluimos que este último mecanismo reproduce y moviliza la idea del mestizaje como una ideología de construcción de nación.

In this paper we explore the ways in which mass media present -and co-produce- human genetic research in Colombia, reproducing certain standardized discourses about science which are cross-cut by gender and race. For this, we conducted an ethnographic analysis of media coverage of human genetics (both population and forensic) in two of the major media in Colombia between 1992-2006 (newspaper) and 2009-2010 (TV news). Our argument is two-fold. First we show that media present genetic science as unique/uniform/objective/neutral/heroic. Second, media present subjects as simultaneously marked and unmarked in terms of race, gender, class, and geography. We conclude by arguing that this mechanism reproduces and mobilizes the ideal of mestizaje as a nation-building ideology in Colombia.

Neste artigo apresenta-se a forma como a mídia colombiana configura a prática da genética humana por meio da reprodução de discursos padronizados de ciência que são atravessados pelo gênero e a raça. Para isso, realizamos uma análise etnográfica da cobertura da genética humana (de populações e forense) no principal jornal impresso e no maior telejornal do país nos períodos 1992-2006 (jornal) e 2009-2010 (jornal e telejornal). Nosso argumento é de que, por um lado, a mídia apresenta a ciência da genética como única/uniforme/objetiva/neutra/heróica. Do outro, apresenta sujeitos que são marcados e desmarcados em termos de raça, gênero, classe e geografia. Como conclusão, aponta-se que o último mecanismo reproduz e mobiliza a ideia da mestiçagem como uma ideologia de construção da nação.