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.

Including Digital Sequence Data in the Nagoya Protocol Can Promote Data Sharing.

The Nagoya Protocol (NP), a legal framework under the Convention on Biological Diversity (CBD), formalises fair and equitable sharing of benefits arising from biological diversity. It encompasses biological samples and associated indigenous knowledge, with equitable return of benefits to those providing samples. Recent proposals that the use of digital sequence information (DSI) derived from samples should also require benefit-sharing under the NP have raised concerns that this might hamper research progress. Here, we propose that formalised benefit-sharing for biological data use can increase willingness to participate in research and share data, by ensuring equitable collaboration between sample providers and researchers, and preventing exploitative practices. Three case studies demonstrate how equitable benefit-sharing agreements might build long-term collaborations, furthering research for global benefits.

Dying in honour: experiences of end-of-life palliative care during the 2013-2016 Ebola outbreak in Guinea.

With no cure and a high mortality rate, Ebola virus disease (EVD) outbreaks require preparedness for the provision of end-of-life palliative care. This qualitative study is part of a larger project on palliative care in humanitarian contexts. Its goal was to document and deepen understanding of experiences and expectations related to end-of-life palliative care for patients infected with Ebola virus disease (EVD) in West African Ebola treatment centres (ETCs) during the 2013-2016 epidemic. It consisted of 15 in-depth semi-structured interviews with individuals impacted by EVD in a Guinean ETC: either as patients in an ETC, healthcare providers, healthcare providers who were also EVD patients at one point, family relations who visited patients who died in an ETC, or providers of spiritual support to patients and family. Analysis was team based and applied an interpretive descriptive approach. Healthcare delivery in humanitarian emergencies must remain respectful of patient preferences but also local and contextual values and norms. Of key importance in the Guinean context is the culturally valued experience of "dying in honour". This involves accompaniment to facilitate a peaceful death, the possibility of passing on final messages to family members, prayer, and particular practices to enact respect for the bodies of the deceased. Participants emphasized several challenges to such death in Ebola treatment centres (ETCs), as well as practices they deemed helpful to alleviating dying patients' suffering. An overarching message in participants' accounts was that ideally more would have been done for the dying in ETCs. Building on participants' accounts, we outline a number of considerations for optimizing end-of-life palliative care during current and future public health emergencies, including for COVID-19.

Organisational framework and outputs of International medical evacuation in Guinea: A need for change.

The study aims to describe the organizational framework of International Medical Evacuation (IME), the profile of persons evacuated, and the associated cost of IME in Guinea. This was a descriptive study of IME policy in Guinea. We described the politico-structural organization of IME and the profile of patient accessing IME through the Ministry of Health (MOH: 2001-2015) and through the National Social Security Fund (NSSF: 2011-2015). From 1958 to 1992 since the health system was restricted, the country negotiated the free medical treatment with Socialist countries. Since 1992, a medical assistance line was included in the sector budgets, and IME was officially managed by the MOH and with a parallel system existing at the NSSF. With an average cost of US $34 251 per case, cardiovascular diseases (20%), Traumatology/Orthopedic diseases (20%), and Neurologic/neurosurgery diseases (12.5%) have motivated more than half of 2445 IME supported by the MOH between 2001 and 2015. With a diagnostic exploration (38.7%) as main motivation, the majority of the IMEs (80.0%) endorsed by the NSSF (2011-2015) concerned their employees/workers or those of the NSSF's supervisory ministry and their families. Despite a strict regulatory framework, the emergence and sustainability of parallel IME systems in other departments with different procedures than MOH's procedure represent a major weakness/deficiency. The new prospects for the free medical treatment of state employees could eventually lead to an effective correction of this structural failure if efficiently managed.

Attitudes about vaccines to prevent Ebola virus disease in Guinea at the end of a large Ebola epidemic: Results of a national household survey.

INTRODUCTION: In 2014-2016, an Ebola epidemic devastated Guinea; more than 3800 cases and 2500 deaths were reported to the World Health Organization. In August 2015, as the epidemic waned and clinical trials of an experimental, Ebola vaccine continued in Guinea and neighboring Sierra Leone, we conducted a national household survey about Ebola-related knowledge, attitudes, and practices (KAP) and opinions about "hypothetical" Ebola vaccines. METHODS: Using cluster-randomized sampling, we selected participants aged 15+ years old in Guinea's 8 administrative regions, which had varied cumulative case counts. The questionnaire assessed socio-demographic characteristics, experiences during the epidemic, Ebola-related KAP, and Ebola vaccine attitudes. To assess the potential for Ebola vaccine introduction in Guinea, we examined the association between vaccine attitudes and participants' characteristics using categorical and multivariable analyses. RESULTS: Of 6699 persons invited to participate, 94% responded to at least 1 Ebola vaccine question. Most agreed that vaccines were needed to fight the epidemic (85.8%) and that their family would accept safe, effective Ebola vaccines if they became available in Guinea (84.2%). These measures of interest and acceptability were significantly more common among participants who were male, wealthier, more educated, and lived with young children who had received routine vaccines. Interest and acceptability were also significantly higher among participants who understood Ebola transmission modes, had witnessed Ebola response teams, knew Ebola-affected persons, believed Ebola was not always fatal, and would access Ebola treatment centers. In multivariable analyses of the majority of participants living with young children, interest and acceptability were significantly higher among those living with vaccinated children than among those living with unvaccinated children. DISCUSSION: The high acceptability of hypothetical vaccines indicates strong potential for introducing Ebola vaccines across Guinea. Strategies to build public confidence in use of Ebola vaccines should highlight any similarities with safe, effective vaccines routinely used in Guinea.

Assessments of Ebola knowledge, attitudes and practices in Forécariah, Guinea and Kambia, Sierra Leone, July-August 2015.

The border region of Forécariah (Guinea) and Kambia (Sierra Leone) was of immense interest to the West Africa Ebola response. Cross-sectional household surveys with multi-stage cluster sampling procedure were used to collect random samples from Kambia (n = 635) in July 2015 and Forécariah (n = 502) in August 2015 to assess public knowledge, attitudes and practices related to Ebola. Knowledge of the disease was high in both places, and handwashing with soap and water was the most widespread prevention practice. Acceptance of safe alternatives to traditional burials was significantly lower in Forécariah compared with Kambia. In both locations, there was a minority who held discriminatory attitudes towards survivors. Radio was the predominant source of information in both locations, but those from Kambia were more likely to have received Ebola information from community sources (mosques/churches, community meetings or health workers) compared with those in Forécariah. These findings contextualize the utility of Ebola health messaging during the epidemic and suggest the importance of continued partnership with community leaders, including religious leaders, as a prominent part of future public health protection.This article is part of the themed issue 'The 2013-2016 West African Ebola epidemic: data, decision-making and disease control'.

New therapeutic landscapes in Africa: parental categories and practices in seeking infant health in the Republic of Guinea.

In considering African health care practice, it is usual to draw strong distinctions between biomedical and traditional practices, and between public and private health institutions. Whilst distinctions between traditional and biomedical, and between public and private medicine make sense from the vantage point of health professionals, we question how far these distinctions are pertinent in shaping health-seeking behaviour given experience of them. This paper argues that other distinctions are becoming far more important to African therapeutic landscapes to the ways that people evaluate the salience of different health providers to their problems. We draw on ethnographic research and illustrative evidence from 1550 'infant health biographies' from rural and urban areas in the Republic of Guinea, where 93% of health expenditure takes place outside the state sector. We outline the distinctions that inform parents' health-seeking practices here. These include distinctions between women's and children's health providers (at state health centres), and those that men frequent (private pharmacies); between familiar ailments with known therapies (whether self-treatment, biomedical or herbal), and unfamiliar ones requiring expert diagnostics (whether from Islamic healers, diviners or doctors); between illnesses treatable by injection, and those aggravated by injection; between types of payment; and between high quality/strong medicines, and poor quality/weak ones. As people engage with emergent therapeutic landscapes, relations of knowledge and expertise, and forms of social solidarity, are emerging with significant implications for potential pathways of health system development, how these are conceptualised, and the forms of citizenship and partnership they might involve.

[Difficulties in partnerships between health professionals and Mutual Health Organisations: the case of Maliando in Guinea-Conakry]. / La difficulté du partenariat entre professionels de santé et mutualistes: le cas de al mutuelle de santé Maliando en Guinée-Conakry.

In 1998, a Mutual Health Organization (MHO) was created in the region of Guinee forestiere in Guinea-Conakry, West Africa, in the context of the action-research project PRIMA (Projet de recherche sur le partage du risque maladie). The aim of the project was to test whether, and under which conditions, an MHO can improve the access to quality health care. The specificity of the model is double-sided: on the one hand, the wish to integrate the organization into the local health system through a partnership between MHO and health services; on the other hand, the systematic efforts by the local research team to involve health professionals, at both the operational and managerial level of the system, in the planning and implementation of the MHO. We present the results of a study that investigates the health professionals' perception of this model. In April 2000, semi-structured interviews were held with 16 health professionals working at the different operational, managerial and administrative levels of the Guinean health system. The professionals perceive the MHO as an effective strategy to overcome financial accessibility problems. However, the interviews highlight the uncertainties and worries of the health professionals, their lack of understanding of the model, their reluctance even to fully accept it. The partnership approach was not internalized. They understand the technical instrument, but are confused and uncomfortable in their dialogue with the population. This study illustrates the difficulties of establishing a real partnership between population and health services, as well as the need for proper training and coaching of the health workers in the set-up of MHOs. The importance of this aspect was insufficiently recognized by the research team, despite its good intentions and its huge investment in organizing exchange between stakeholders. An important lesson of this experience is the need for promoters to conceive and operate MHO systems in which the expectations and fears of the health care providers are better identified and better taken into account.