Rapid qualitative health research from the Global South: Reflections and learnings from Argentina, Brazil, Chile, and Mexico during the COVID-19 pandemic.

The objective of this paper is to provide insights into our experiences undertaking qualitative rapid research in Latin American contexts based on fieldwork from Argentina, Brazil, Chile, and Mexico. We focus on the insights and learning processes that emerged from our research teamwork during the COVID-19 pandemic. Our research projects are part of an international collaboration led by the Rapid Research Evaluation and Appraisal Lab (RREAL) to explore the experiences of COVID-19 Frontline Healthcare Workers. The analyzed experiences not only rely on the local studies but also on our reflections as a group of Latin American researchers collaborating along with an international team. Qualitative research has an important and long-lasting tradition in Latin America. However, healthcare professionals are still reluctant to use these methods. We highlight tensions and dilemmas that have emerged from our own empirical experience: First, the time for research ethics committees to evaluate the protocols; second, the difficulties in accessing funding to undertake research due to the lack of financial opportunities; third, having to decide the language of our publications. That is just the tip of the iceberg that allows us to show inequalities in the conditions under which scientific knowledge is produced between the North and the Global South. Following these points, our text explores the tension between the urgency to conduct rapid research and the multiple difficulties when undertaking it during the pandemic. It is important to point out that the problems we faced already existed before the sanitary emergency, being magnified by the former. At last, our conclusions delve into the reflexive process we, as a team of female researchers, undertook to explore the differences and similarities of our experiences. This analysis allowed us to solve obstacles and dilemmas when doing research. The winding road we describe here serves as an example for other research teams when planning and undertaking rapid qualitative research during future pandemics.

On the road and away from home: a systematic review of the travel experiences of cancer patients and their families.

PURPOSE: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families. METHODS: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies. RESULTS: A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home. CONCLUSIONS: Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.

What is not, but might be: The disnarrated in parents' stories of their child's cancer treatment.

The study of illness narratives is based on the premise that stories are told for a reason and storytellers make narrative decisions on what to include and leave out of a story, the style of narration, the place where the story is told and the audience. Through this narrative work, they situate themselves in particular ways and make sense of the illness and the world around them. In this article, we explore the disnarrated, a style of narration that features events that do not happen, but are nonetheless referred to in the story. The aim of the article is to illustrate the additional layers of meaning that can be uncovered from illness stories when attention is paid to what did not happen, but, yet, is still part of the story. We draw from a qualitative study carried out with 17 parents whose children were diagnosed with cancer and were receiving medical care in Argentina. We carried out narrative interviews with the parents and participant-observation in hospital areas and the hotels where they resided during treatment. The analysis of the interview transcripts was carried out using a holistic understanding of the narratives and focusing on the identification of themes that appeared disnarrated. The fieldnotes from the observations were used to contextualize the narrative analysis. The disnarrated, in its many manifestations, produced a layer of analysis of parents' stories of treatment patterned by parents' desires, hopes and fears. The disnarrated was used by parents to discuss alternative care trajectories and express fears regarding what the future would bring for the child and family. The disnarrated is a useful analytical tool for examining illness stories as it points to storytellers' views of what is acceptable or desirable in their world and their hopes and preferences for alternative realities.

Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012 / Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012

Resumen: El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de "muerte digna" en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la "muerte digna" ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.

Abstract: This article examines the regulation on terminal patients' rights in Argentina at two points in time: the first attempts to regulate end-of-life rights (1996), and the "death with dignity" law passed by the National Congress (2011-2012). Comparative analysis allows us to observe variations among the individuals and situations included in the legislation, as well as in the conceptualization of autonomy and the interventions that is considered lawful refuse. The political context and the differential way that "death with dignity" entered the legislative agenda in each period determined the public's construction of the problem and thus the extent and result of the debates.

An ethnographic exploration of the delivery of psychosocial care to children with cancer in Argentina.

PURPOSE: The integration of psychosocial care in the routine care of cancer patients has been set as an international standard, but there are healthcare contexts where these services are lacking as psychosocial care providers are not incorporated in multidisciplinary teams and screening for psychological distress is not carried out routinely or systematically. METHOD: In this article, we discuss the findings from an ethnographic study that focused on exploring the working experiences of psychosocial care providers from one children's hospital in Buenos Aires, Argentina. The study is based on 10 in-depth interviews with hospital staff members and participant observation in selected hospital areas. The transcripts from the interviews and fieldnotes from the observations were analyzed using thematic analysis. RESULTS: We found that psychosocial care providers encounter difficulties while attempting to deliver services to children and their families, produced mainly by their lack of collaboration with other professional groups, insufficient human resources, and a growing patient population. As a result of this situation, psychosocial care providers often prioritize some patients over others, leaving a considerable number of patients and family members without psychosocial support. CONCLUSIONS: The study highlighted the barriers psychosocial care providers encounter while attempting to deliver services to children and their families. Further work needs to be carried out to fully integrate psychosocial care in national health policies and ensure this type of support is available for all patients and their families.

Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012. / Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012.

This article examines the regulation on terminal patients' rights in Argentina at two points in time: the first attempts to regulate end-of-life rights (1996), and the "death with dignity" law passed by the National Congress (2011-2012). Comparative analysis allows us to observe variations among the individuals and situations included in the legislation, as well as in the conceptualization of autonomy and the interventions that is considered lawful refuse. The political context and the differential way that "death with dignity" entered the legislative agenda in each period determined the public's construction of the problem and thus the extent and result of the debates.

El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de "muerte digna" en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la "muerte digna" ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.

Debates parlamentarios sobre la muerte digna en Argentina: los derechos de los pacientes terminales en la agenda legislativa, 1996-2012 / Parliamentary debates on death with dignity in Argentina: the rights of terminal patients on the legislative agenda, 1996-2012

El artículo examina la producción legislativa sobre derechos de los pacientes terminales en Argentina en dos momentos: los primeros intentos de regular los derechos en el final de la vida (1996) y la sanción de la ley de “muerte digna” en el Congreso Nacional (2011-2012). El análisis comparativo permite observar variaciones en torno a las personas y situaciones incluidas en la legislación, la forma en que se conceptualiza la autonomía y las intervenciones que se considera legítimo rechazar. El contexto político y la forma diferencial en que la “muerte digna” ingresó en la agenda legislativa en cada periodo determinaron la construcción pública del problema y con ello los alcances y el resultado de los debates.(AU)

An examination of advanced cancer caregivers' support provided by staff interventions at hospices in Argentina.

The aim of the study was to describe the type of intervention provided by hospice staff in order to address the pragmatic, psycho-social, and spiritual needs of home-caregivers for patients in the last stage of cancer. The qualitative inquiry was carried out in real life contexts. The explicit demands that caregivers (n = 40) identified in the first interviews were: (1) helping to organize the care of the patient at home; (2) unspecific demands, with unclear or unrealistic purposes (e.g., curative treatment or a miracle expected to occur); (3) specific resources (such as formal caregivers to replace them), and (4) a place to leave the patient either for a temporary period (a respite for the family) or in a permanent way. The main issues discussed were the delays in the patients' referral to the hospice and the lack of time for long-term interventions; explicit focus is placed on the care by addressing the spiritual and emotional needs of caregivers, unlike in hospital settings where professionals avoid discussions of spiritual needs due to a lack of time, inadequate training and poor understanding of spirituality; hospices' interventions are based upon an ethos similar to the movement's original Christian spirit with emphasis placed on qualities of care such as love, charity, and compassion besides expertise and end-of-life competence, all while tolerating a sense of abandonment by health and social security systems following the patient's referral.