They do their utmost: promise and limits of palliative care in two refugee camps in Rwanda, a qualitative study.

After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers.

An analysis of how health systems integrated priority-setting in the pandemic planning in a sample of Latin America and the Caribbean countries.

BACKGROUND: Latin America and the Caribbean (LAC) are among those regions most affected by the COVID-19 pandemic worldwide. The COVID-19 pandemic has strained health systems in the region. In this context of severe healthcare resource constraints, there is a need for systematic priority-setting to support decision-making which ensures the best use of resources while considering the needs of the most vulnerable groups. The aim of this paper was to provide a critical description and analysis of how health systems considered priority-setting in the COVID-19 response and preparedness plans of a sample of 14 LAC countries; and to identify the associated research gaps. METHODS: A documentary analysis of COVID-19 preparedness and response plans was performed in a sample of 14 countries in the LAC region. We assessed the degree to which the documented priority-setting processes adhered to established quality indicators of effective priority-setting included in the Kapiriri and Martin framework. We conducted a descriptive analysis of the degree to which the reports addressed the quality parameters for each individual country, as well as a cross-country comparison to explore whether parameters varied according to independent variables. RESULTS: While all plans were led and supported by the national governments, most included only a limited number of quality indicators for effective priority-setting. There was no systematic pattern between the number of quality indicators and the country's health system and political contexts; however, the countries that had the least number of quality indicators tended to be economically disadvantaged. CONCLUSION: This study adds to the literature by providing the first descriptive analysis of the inclusion of priority-setting during a pandemic, using the case of COVID-19 response and preparedness plans in the LAC region. The analysis found that despite the strong evidence of political will and stakeholder participation, none of the plans presented a clear priority-setting process, or used a formal priority-setting framework, to define interventions, populations, geographical regions, healthcare setting or resources prioritized. There is need for case studies that analyse how priority-setting actually occurred during the COVID-19 pandemic and the degree to which the implementation reflected the plans and the parameters of effective priority-setting, as well as the impact of the prioritization processes on population health, with a focus on the most vulnerable groups.

Barriers to vasectomy acceptance and uptake in Nigeria: A review of the literature.

There is growing support of male involvement in reproductive health and the integration of voluntary vasectomy services into national family planning programs in lower resource contexts; yet, the prevalence of women of reproductive age who rely on vasectomy in African countries such as Nigeria, is less than 1 percent. This review was conducted to gain a broader understanding of current sociocultural and health systems' conditions that need to be addressed to expand the integration and acceptability of vasectomy as an option for family planning in Nigeria. To explore this, a scoping of existing literature on vasectomy in Nigeria between 2009 to 2021 was conducted. The review focused on qualitative studies and grey literatures. The findings reveal that there is a strong awareness of vasectomy among men in Nigeria. Yet, several factors such as fear and religious and cultural beliefs prevent men from having the same confidence in vasectomy as they have in female biomedical methods. These findings have implications for future family planning policies, strategies and programmes in the country.

Reflections of methodological and ethical challenges in conducting research during COVID-19 involving resettled refugee youth in Canada.

Research involving migrant youth involves navigating and negotiating complex challenges in order to uphold their rights and dignity, but also all while maintaining scientific rigour. COVID-19 has changed the global landscape within many domains and has increasingly highlighted inequities that exist. With restrictions focusing on maintaining physical distancing set in place to curb the spread of the virus, conducting in-person research becomes complicated. This article reflects on the ethical and methodological challenges encountered when conducting qualitative research during the pandemic with Syrian migrant youth who are resettled in Canada. The three areas discussed from the study are recruitment, informed consent and managing the interviews. Special attention to culture as being part of the study's methodology as an active reflexive process is also highlighted. The goal of this article is to contribute to the growing understanding of complexities of conducting research during COVID-19 with populations which have layered vulnerabilities, such as migrant youth. This article hopes that the reflections may help future researchers in conducting their research during this pandemic by being cognizant of both the ethical and methodological challenges discussed.

Nurses' experiences of their decision-making process when participating in clinical trials during the 2014-2016 West African Ebola crisis.

OBJECTIVE: Due to the absence of a licenced vaccine or drug for treatment of Ebola patients during the 2014-2016 West Africa outbreak, frontline nurses were at increased risk of exposure. Hence, they were prioritized to participate in clinical trials to receive experimental therapeutics. To our knowledge no study has explored the nurses' experiences of their decision-making process when volunteering in clinical trials using unproven agents, which is the purpose of this qualitative study. METHODS: This study, part of a larger Ebola study, thematically analyzed the interview data of nine nurses recruited from Sierra Leone, Guinea and Liberia; of which four joined a convalescent plasma trial and five a vaccine trial. RESULTS: In their decision-making process to partake in a clinical trial, nurses identified two distinct decision points: the initial commitment followed by the point of no return when they presented themselves to participate. Each of these decisions were influenced by risk versus benefits calculations, and contextual factors. CONCLUSION: Results showed the need for more health education and communication around the unproven agents in order for nurses to make informed decisions.

Women's freedom of movement and participation in psychosocial support groups: qualitative study in northern India.

BACKGROUND: Depression, the world's leading cause of disability, disproportionately affects women. Women in India, one of the most gender unequal countries worldwide, face systemic gender disadvantage that significantly increases the risk of common mental disorders. This study's objective was to examine the factors influencing women's participation in psychosocial support groups, within an approach where community members work together to collectively strengthen their community's mental health. METHODS: This community-based qualitative study was conducted from May to July 2016, across three peri-urban sites in Dehradun district, Uttarakhand, Northern India. Set within an NGO-run mental health project, data were collected through focus group discussions with individuals involved in psychosocial support groups including women with psychosocial disabilities as well as caregivers (N = 10, representing 59 women), and key informant interviews (N = 8) with community members and mental health professionals. Data were analyzed using a thematic analysis approach. RESULTS: The principal barrier to participating in psychosocial support groups was restrictions on women's freedom of movement. Women in the community are not normally permitted to leave home, unless going to market or work, making it difficult for women to leave their home to participate in the groups. The restrictions emanated from the overall community's attitude toward gender relations, the women's own internalized gender expectations, and most significantly, the decision-making power of husbands and mothers-in-law. Other factors including employment and education shaped women's ability to participate in psychosocial support groups; however, the role of these additional factors must be understood in connection to a gender order limiting women's freedom of movement. CONCLUSIONS: Mental health access and gender inequality are inseparable in the context of Northern India, and women's mental health cannot be addressed without first addressing underlying gender relations. Community-based mental health programs are an effective tool and can be used to strengthen communities collectively; however, attention towards the gender constraints that restrict women's freedom of movement and their ability to access care is required. To our knowledge, this is the first study to clearly document and analyze the connection between access to community mental health services in South Asia and women's freedom of movement.

Canadian hospital nurses' roles in communication and decision-making about goals of care: An interpretive description of critical incidents.

BACKGROUND: Nurses in acute medical units are uniquely positioned to support goals of care communication. Further understanding of nurse and physician perceptions about hospital nurses' actual and possible roles was required to improve goals of care communication. OBJECTIVE: To critically examine nurse and physician perceptions of the nurse's role in communication with seriously ill patients and their families. DESIGN: We focus on the qualitative component of a mixed method study. We employed an interpretive descriptive approach informed by Flanagan's critical incident technique. SETTINGS: Participants were recruited from the acute medical units at three tertiary care hospitals in three Canadian provinces. PARTICIPANTS: Thirty participants provided interviews (10 from each site): 12 nurses, 9 staff physicians and 9 medical resident physicians. METHODS: Participants' described "critical incidents" they considered as "excellent" or "poor" or "usual" practice. Interviews, were audiotaped and transcribed. Team-based analysis used constant comparison and triangulation to identify healthcare team members' roles in goals of care communication. RESULTS: We identified two major themes from 120 critical incidents: 1) the ambiguous nature of the nurse's role in formal, physician-led, decision-making communication, and 2) embedded in care serious illness communication. Physicians understood nurses' supportive role in relation to their own communication practices that culminated in decisions about care; nurses' reported their roles were determined by unit routines, physician practices and preferences, and their self-confidence in supporting decision-making. Nurses described their unique role in facilitating informal and spontaneous communication with patients and families that was critical background work to physician-led goals of care communication. CONCLUSIONS: Nurses and physicians had different understandings, practices and beliefs about goals of care communication The value of nurses embedded in care work is key to supporting the interprofessional team's work during formal goals of care communication.

Depression and Global Mental Health in the Global South: A Critical Analysis of Policy and Discourse.

Over the past two decades, depression has become a prominent global public health concern, especially in low- and middle-income countries (LMICs). The World Health Organization (WHO) and the Movement for Global Mental Health have developed international guidelines to improve mental health services globally, prioritizing LMICs. These efforts hold promise for advancing care and treatment for depression and other mental, neurological, and substance abuse disorders in LMICs. The intervention guides, such as the WHO's mhGAP-Intervention Guides, are evidence-based tools and guidelines to help detect, diagnose, and manage the most common mental disorders. Using the Global South as an empirical site, this article draws on Foucauldian critical discourse and document analysis methods to explore how these international intervention guides operate as part of knowledge-power processes that inscribe and materialize in the world in some forms rather than others. It is proposed that these international guidelines shape the global discourse about depression through their (re)production of biopolitical assumptions and impacts, governmentality, and "conditions of possibility." The article uses empirical data to show nuance, complexity, and multi-dimensionality where binary thinking sometimes dominates, and to make links across arguments for and against global mental health. The article concludes by identifying several resistive discourses and suggesting reconceptualizing the treatment gap for common mental disorders.

"We Live Our Life Normal": A Qualitative Analysis of Nigerian Women's Health-Seeking Behavior during the COVID-19 Pandemic.

BACKGROUND: This study examined where women sought healthcare during the COVID-19 pandemic and their reasons for doing so. We aim to understand further how women accessed care during the COVID-19 pandemic to inform future preparedness and response efforts. This knowledge gained from this study can inform strategies to address existing gaps in access and ensure that women's health needs are adequately considered during emergencies. METHODS: This study used an interpretive phenomenological-analysis approach to analyze data on women's experiences with healthcare in Nigeria as the COVID-19 pandemic progressed. Semi-structured interviews were conducted with 24 women aged 15 to 49 between August and November 2022 and were supplemented with three focus-group discussions. RESULTS: Following our analysis, three superordinate themes emerged: (i) barriers to seeking timely and appropriate healthcare care, (ii) the influence of diverse health practices and beliefs on health-seeking behavior, and (iii) gendered notions of responsibility and of coping with financial challenges. CONCLUSIONS: This paper examined women's decision to seek or not seek care, the type of care they received, and where they went for care. Women felt that the COVID-19 pandemic affected their decision to seek or not seek care.

How did European countries set health priorities in response to the COVID-19 threat? A comparative document analysis of 24 pandemic preparedness plans across the EURO region.

The COVID-19 pandemic has forced governments across the world to consider how to prioritise the allocation of scarce resources. There are many tools and frameworks that have been designed to assist with the challenges of priority setting in health care. The purpose of this study was to examine the extent to which formal priority setting was evident in the pandemic plans produced by countries in the World Health Organisation's EURO region, during the first wave of the COVID-19 pandemic. This compliments analysis of similar plans produced in other regions of the world. Twenty four pandemic preparedness plans were obtained that had been published between March and September 2020. For data extraction, we applied a framework for identifying and assessing the elements of good priority setting to each plan, before conducting comparative analysis across the sample. Our findings suggest that while some pre-requisites for effective priority setting were present in many cases - including political commitment and a recognition of the need for allocation decisions - many other hallmarks were less evident, such as explicit ethical criteria, decision making frameworks, and engagement processes. This study provides a unique insight into the role of priority setting in the European response to the onset of the COVID-19 pandemic.

A global comparative analysis of the the inclusion of priority setting in national COVID-19 pandemic plans: A reflection on the methods and the accessibility of the plans.

BACKGROUND: Despite the swift governments' response to the COVID-19 pandemic, there remains a paucity of literature assessing the degree to which; priority setting (PS) was included in the pandemic plans and the pandemic plans were publicly accessible. This paper reflects on the methods employed in a global comparative analysis of the degree to which countries integrated PS into their COVID-19 pandemic plans based on Kapiriri & Martin's framework. We also assessed if the accessibility of the plans was related to the country's transparency index. METHODS: Through a three stage search strategy, we accessed and reviewed 86 national COVID-19 pandemic plans (and 11 Canadian provinces and territories). Secondary analysis assessed any alignment between the readily accessible plans and the country's transparency index. RESULTS AND CONCLUSION: 71 national plans were readily accessible while 43 were not. There were no systematic differences between the countries whose plans were readily available and those whose plans were 'missing'. However, most of the countries with 'missing' plans tended to have a low transparency index. The framework was adapted to the pandemic context by adding a parameter on the need to plan for continuity of priority routine services. While document review may be the most feasible and appropriate approach to conducting policy analysis during health emergencies, interviews and follow up document review would assess policy implementation.

Stakeholder participation in the COVID-19 pandemic preparedness and response plans: A synthesis of findings from 70 countries.

Stakeholder participation is a key component of a fair and equitable priority-setting in health. The COVID-19 pandemic highlighted the need for fair and equitable priority setting, and hence, stakeholder participation. To date, there is limited literature on stakeholder participation in the development of the pandemic plans (including the priority setting plans) that were rapidly developed during the pandemic. Drawing on a global study of national COVID-19 preparedness and response plans, we present a secondary analysis of COVID-19 national plans from 70 countries from the six WHO regions, focusing on stakeholder participation. We found that most plans were prepared by the Ministry of Health and acknowledged WHO guidance, however less than half mentioned that additional stakeholders were involved. Few plans described a strategy for stakeholder participation and/or accounted for public participation in the plan preparation. However, diverse stakeholders (including multiple governmental, non-governmental, and international organizations) were proposed to participate in the implementation of the plans. Overall, there was a lack of transparency about who participated in decision-making and limited evidence of meaningful participation of the community, including marginalized groups. The critical relevance of stakeholder participation in priority setting requires that governments develop strategies for meaningful participation of diverse stakeholders during pandemics such as COVID-19, and in routine healthcare priority setting.

Priority setting in times of crises: an analysis of priority setting for the COVID-19 response in the Western Pacific Region.

BACKGROUND: While priority setting is recognized as critical for promoting accountability and transparency in health system planning, its role in supporting rational, equitable and fair pandemic planning and responses is less well understood. This study aims to describe how priority setting was used to support planning in the initial stage of the pandemic response in a subset of countries in the Western Pacific Region (WPR). METHODS: We purposively sampled a subset of countries from WPR and undertook a critical document review of the initial national COVID-19 pandemic response plans. A pre-specified tool guided data extraction and the analysis examined the use of quality parameters of priority setting, and equity considerations. RESULTS: Nine plans were included in this analysis, from the following countries: Papua New Guinea, Tonga, The Philippines, Fiji, China, Australia, New Zealand, Japan, and Taiwan. Most commonly the plans described strong political will to respond swiftly, resource needs, stakeholder engagement, and defined the roles of institutions that guided COVID-19 response decision-making. The initial plans did not reflect strong evidence of public engagement or considerations of equity informing the early responses to the pandemic. CONCLUSION: This study advances an understanding of how priority setting and equity considerations were integrated to support the development of the initial COVID-19 responses in nine countries in WPR and contributes to the literature on health system planning during emergencies. This baseline assessment reveals evidence of the common priority setting parameters that were deployed in the initial responses, the prioritized resources and equity considerations and reinforces the importance of strengthening health system capacity for priority setting to support future pandemic preparedness.

Perceptions of Cancer in Parents of Adolescent Daughters in Northwest Cameroon.

BACKGROUND: Cancer is a rapidly rising cause of morbidity and mortality in sub-Saharan Africa. Cervical cancer, in particular, is still one of the leading causes of mortality for women in this setting. The uptake of healthcare services is in part influenced by patients' belief systems. We sought to better understand the perception of cancer in the Kom tribe of Northwest Cameroon. METHODS: A qualitative research study was completed using a semi-structured interview guide and one-on-one interviews with 45 parents of girls aged 9-14 years. These girls were candidates for free HPV vaccination to prevent cervical cancer. The interviews were recorded, transcribed, and analyzed using ATLAS.ti 9. RESULTS: Thirty-five mothers and ten fathers with a median age of 42 yo were interviewed from Mbingo, Belo, Njinikom, and Fundong. Half of the parents were farmers, with three being herbalists or traditional medicine doctors. Seventy-seven percent had either no or only primary school education. None had had cancer. All knew at least one person with cancer. The most common word for cancer in the Kom language is "ngoissu". It can refer to a bad infection or cancer. The occurrence of ngoissu is the result of either a curse placed on you, ancestral retribution, or transgressing the ngoulatta (snail shell spoken over and usually placed in a garden). The implications are that treatment of ngoissu must involve the traditional doctor who determines the spiritual issue and prescribes a remedy (like a herb or tea) and/or an incantation. Within the context of cancer, this can lead to a delay in diagnosis until the disease is no longer curable by conventional therapies. CONCLUSION: Ways to bridge biomedical healthcare services and traditional medicine are needed, especially in tribal contexts where the latter is an integral part of daily life.

Complexities and benefits of adopting next-generation sequencing-based tuberculosis diagnostics: a qualitative study among stakeholders in low and high-income countries.

OBJECTIVES: To clarify perceived benefits, barriers and facilitators of Mycobacterium tuberculosis next-generation sequencing implementation in Madagascar and Canada, towards informing implementation of this diagnostic technology in public health agencies and clinical settings in and beyond these settings. DESIGN: This qualitative study involved conducting semistructured interviews with key stakeholders engaged with next-generation sequencing implementation in Madagascar and Canada. Team-based descriptive analysis supported by Nvivo V.12.0 was used to identify key themes. SETTING: The study was conducted with participants involved at the clinical, diagnostic and surveillance levels of tuberculosis (TB) management from Madagascar and Canada. PARTICIPANTS: Eighteen participants were interviewed (nine Madagascar and nine Canada) and included individuals purposively sampled based on involvement with TB surveillance, laboratory diagnosis and clinical management. RESULTS: The following five themes emerged in the analysis of Malagasy and Canadian interviews: (1) heterogeneity in experience with established TB diagnostics, (2) variable understanding of new sequencing-based diagnostics potential; (3) further evidence as being key to expand adoption; (4) ethical arguments and concerns; (5) operational and system-level considerations. CONCLUSION: There persists important lack of familiarity with TB next-generation sequencing (TB NGS) applications among stakeholders in Canada and Madagascar. This translates into skepticism on the evidence underlying its use and its true potential value added within global public health systems. If deployed, TB NGS testing should be integrated with clinical and surveillance programmes. Although this is perceived as a priority, leadership and funding responsibilities for this integration to happen remains unclear to clinical, laboratory and public health stakeholders.

A rapid qualitative methods assessment and reporting tool for epidemic response as the outcome of a rapid review and expert consultation.

During the first year of the COVID-19 pandemic, the Methods Sub-Group of the WHO COVID-19 Social Science Research Roadmap Working Group conducted a rapid evidence review of rapid qualitative methods (RQMs) used during epidemics. The rapid review objectives were to (1) synthesize the development, implementation, and uses of RQMs, including the data collection tools, research questions, research capacities, analytical approaches, and strategies used to speed up data collection and analysis in their specific epidemic and institutional contexts; and (2) propose a tool for assessing and reporting RQMs in epidemics emergencies. The rapid review covered published RQMs used in articles and unpublished reports produced between 2015 and 2021 in five languages (English, Mandarin, French, Portuguese, and Spanish). We searched multiple databases in these five languages between December 2020 and January 31, 2021. Sources employing "rapid" (under 6 months from conception to reporting of results) qualitative methods for research related to epidemic emergencies were included. We included 126 published and unpublished sources, which were reviewed, coded, and classified by the research team. Intercoder reliability was found to be acceptable (Krippendorff's α = 0.709). We employed thematic analysis to identify categories characterizing RQMs in epidemic emergencies. The review protocol was registered at PROSPERO (no. CRD42020223283) and Research Registry (no. reviewregistry1044). We developed an assessment and reporting tool of 13 criteria in three domains, to document RQMs used in response to epidemic emergencies. These include I. Design and Development (i. time frame, ii. Training, iii. Applicability to other populations, iv. Applicability to low resource settings, v. community engagement, vi. Available resources, vii. Ethical approvals, viii. Vulnerability, ix. Tool selection); II. Data Collection and Analysis (x. concurrent data collection and analysis, xi. Targeted populations and recruitment procedures); III. Restitution and Dissemination (xii. Restitution and dissemination of findings, xiii. Impact). Our rapid review and evaluation found a wide range of feasible and highly effective tools, analytical approaches and timely operational insights and recommendations during epidemic emergencies.

Aid when 'there is nothing left to offer': Experiences of palliative care and palliative care needs in humanitarian crises.

Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as a necessary component of humanitarian response. Palliative approaches to care can meet the needs of patients for whom curative treatment may not be the aim, not just at the very end of life but alleviation of suffering more broadly. In the past several years many organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still regarded by many as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. This article presents a synthesis of findings from five qualitative sub-studies within a research program on palliative care provision in humanitarian crises that sought to better understand the ethical and practical dimensions of humanitarian organizations integrating palliative care into emergency responses. Our multi-disciplinary, multi-national team held 98 in-depth semi-structured interviews with people with experiences in natural disasters, refugee camps in Rwanda and Jordan, and in Ebola Treatment Centers in Guinea. Participants included patients, family members, health care workers, and other staff of humanitarian agencies. We identified four themes from descriptions of the struggles and successes of applying palliative care in humanitarian settings: justification and integration of palliative care into humanitarian response, contextualizing palliative care approaches to crisis settings, the importance of being attentive to the 'situatedness of dying', and the need for retaining a holistic approach to care. We discuss these findings in relation to the ideals embraced in palliative care and corresponding humanitarian values, concluding that palliative care in humanitarian response is essential for responding to avoidable pain and suffering in humanitarian settings.