Solidarity and suffering: enrolled terminal patients' and their caregiver's experiences of the community-based palliative care programme in an urban slum of Bangladesh.

Background: Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, 'Momotamoy Korail' run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. Methods: This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semi-structured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Results: Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Conclusion: Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable.

COVID-19 pandemic experiences of students from BAME and White ethnic groups pursuing higher education in the UK: A qualitative comparative exploration.

Background: The new severe acute respiratory syndrome coronavirus 2, SARS-Cov2, more commonly known as COVID-19 continues to be an ongoing cause of one of the most disruptive pandemics worldwide. UK universities comprise students who come from different backgrounds and cultures and the majority returned home or lived alone during the lockdown. This qualitative study aimed to compare the experiences of students from Black, Asian, and Minority Ethnic (BAME) backgrounds and White British students. Materials and methods: An in-depth interview was conducted with each of 35 students-18 from BAME and 17 from White backgrounds-in their homes on Zoom or Microsoft between November 2020 and May 2021. Interview transcripts were checked for accuracy and were analysed using N-Vivo coding software for themes. The pre-pandemic and pandemic experiences of students were collected in the form of a data, including perceptions of the COVID-19 virus, the physical environment in which students lived, and the effect on their general wellbeing, social interactions, online learning, teaching, and assessment. Results: Mental health issues were more prevalent among female students compared to males and this was more evident amongst BAME females who had returned to living at home, possibly due to lack of personal space. There was a reduction in personal hygiene in White females. There was an increase in the use of social media, particularly by BAME females. Students mostly disliked online learning and exams. Concerns were also raised about how universities communicated important information to the students. Conclusion: Based on the recommendations of the WHO in relation to COVID-19, universities need to effectively manage the information they provide to students and build trust through risk communication and community engagement. One important area in this regard is addressing access to mental health services. The reasons why BAME females experience more mental health issues should be explored further.

Scoping review of Neglected Tropical Disease Interventions and Health Promotion: A framework for successful NTD interventions as evidenced by the literature.

BACKGROUND: Neglected Tropical Diseases (NTDs) affect more than one billion people globally. A Public Library of Science (PLOS) journal dedicated to NTDs lists almost forty NTDs, while the WHO prioritises twenty NTDs. A person can be affected by more than one disease at the same time from a range of infectious and non-infectious agents. Many of these diseases are preventable, and could be eliminated with various public health, health promotion and medical interventions. This scoping review aims to determine the extent of the body of literature on NTD interventions and health promotion activities, and to provide an overview of their focus while providing recommendations for best practice going forward. This scoping review includes both the identification of relevant articles through the snowball method and an electronic database using key search terms. A two-phased screening process was used to assess the relevance of studies identified in the search-an initial screening review followed by data characterization using the Critical Appraisal Skills Program (CASP). Studies were eligible for inclusion if they broadly described the characteristics, methods, and approaches of (1) NTD interventions and/or (2) community health promotion. PRINCIPAL FINDINGS: 90 articles met the CASP criteria partially or fully and then underwent a qualitative synthesis to be included in the review. 75 articles specifically focus on NTD interventions and approaches to their control, treatment, and elimination, while 15 focus specifically on health promotion and provide a grounding in health promotion theories and perspectives. 29 of the articles provided a global perspective to control, treatment, or elimination of NTDs through policy briefs or literature reviews. 19 of the articles focused on providing strategies for NTDs more generally while 12 addressed multiple NTDs or their interaction with other infectious diseases. Of the 20 NTDs categorized by the WHO and the expanded NTD list identified by PLOS NTDs, several NTDs did not appear in the database search on NTD interventions and health promotion, including yaws, fascioliasis, and chromoblastomycosis. CONCLUSIONS: Based on the literature we have identified the four core components of best practices including programmatic interventions, multi sectoral and multi-level interventions, adopting a social and ecological model and clearly defining 'community.' NTD interventions tend to centre on mass drug administration (MDA), particularly because NTDs were branded as such based on their being amenable to MDA. However, there remains a need for intervention approaches that also include multiple strategies that inform a larger multi-disease and multi-sectoral programme. Many NTD strategies include a focus on WASH and should also incorporate the social and ecological determinants of NTDs, suggesting a preventative and systems approach to health, not just a treatment-based approach. Developing strong communities and incorporating social rehabilitation at the sublocation level (e.g. hospital) could benefit several NTDs and infectious diseases through a multi-disease, multi-sectoral, and multi-lateral approach. Finally, it is important the 'community' is clearly defined in each intervention, and that community members are included in intervention activities and viewed as assets to interventions.

'Look under the sheets!' Fighting with the senses in relation to defecation and bodily care in hospitals and care institutions.

This essay focuses on sensory aspects of care in situations surrounding defecation in hospitals and other care institutions. Sensory activity does not merely encompass pleasant experiences that enhance healing and well-being. Anthropologists-and other disciplines as well-have paid little attention to unpleasant and disgusting experiences that our senses meet and that may rather increase pain and suffering in the context of care. Our essay therefore reflects on a common but highly uncomfortable aspect of being a-sometimes bedridden-patient: defecation. The sensory effects of human defecation are well known. They affect at least four of the five traditional senses. But equally repulsive are the social and emotional effects that defecation in a hospital context has on both patients and professional and other care providers. The essay is based on anthropological observations and the authors' personal experiences in Bangladesh, Ghana and the Netherlands and covers a wide variety of cultural and politicoeconomic conditions. It further draws on (scarce) scientific publications as well as on fictional sources. Extensive quotations from these various sources are presented to convey the lived sensorial experience of disgust and overcoming disgust more directly to the reader.

Severely stigmatised skin neglected tropical diseases: a protocol for social science engagement.

More than one billion people are affected by neglected tropical diseases (NTDs) and many of these diseases are preventable. While the grouping of these conditions as NTDs has generated vast mapping, mass drug administration and surveillance programmes, there is growing evidence of gaps and weaknesses in purely biomedical approaches, and the need for responses that also recognise the social determinants of health. In order to unpack the social and political determinants of NTDs, it is important to view the problem from a social science perspective. Given this background, the Social Sciences for Severe Stigmatizing Skin Diseases (5S) Foundation has recently been established by the Centre for Global Health Research at Brighton and Sussex Medical School. The broad aim of the 5S Foundation is to incorporate social science perspectives in understanding and addressing the problems around three NTDs, namely, podoconiosis, mycetoma and scabies. This protocol paper sets out the aims and approaches of the 5S Foundation while activities such as research, public engagement, training and capacity building get underway.

Mental Health Services for Syrian Refugees in Lebanon: Perceptions and Experiences of Professionals and Refugees.

We applied semi-structured and in-depth interviews to explore the perceptions and experiences of 60 practitioners/policymakers and 25 Syrian participants involved in mental health services for refugees in Lebanon. Refugees were found to view their distress as a normal shared reaction to adversity while professionals perceived it as symptomatic of mental illness. Practitioners viewed Syrian culture as an obstacle to providing care and prioritized educating refugees about mental health conditions. Policymakers invoked the state of crisis to justify short-term interventions, while Syrian refugees requested community interventions and considered resettlement in a third country the only solution to their adverse living conditions. The therapeutic relationship seems threatened by mistrust, since refugees change their narratives as an adaptive mechanism in response to the humanitarian system, which professionals consider manipulative. We discuss the implications of our findings for mental health practice in humanitarian settings.

Context-led capacity building in time of crisis: fostering non-communicable diseases (NCD) research skills in the Mediterranean Middle East and North Africa.

BACKGROUND: This paper examines one EC-funded multinational project (RESCAP-MED), with a focus on research capacity building (RCB) concerning non-communicable diseases (NCDs) in the Mediterranean Middle East and North Africa. By the project's end (2015), the entire region was engulfed in crisis. OBJECTIVE: Designed before this crisis developed in 2011, the primary purpose of RESCAP-MED was to foster methodological skills needed to conduct multi-disciplinary research on NCDs and their social determinants. RESCAP-MED also sought to consolidate regional networks for future collaboration, and to boost existing regional policy engagement in the region on the NCD challenge. This analysis examines the scope and sustainability of RCB conducted in a context of intensifying political turmoil. METHODS: RESCAP-MED linked two sets of activities. The first was a framework for training early- and mid-career researchers through discipline-based and writing workshops, plus short fellowships for sustained mentoring. The second integrated public-facing activities designed to raise the profile of the NCD burden in the region, and its implications for policymakers at national level. Key to this were two conferences to showcase regional research on NCDs, and the development of an e-learning resource (NETPH). RESULTS: Seven discipline-based workshops (with 113 participants) and 6 workshops to develop writing skills (84 participants) were held, with 18 fellowship visits. The 2 symposia in Istanbul and Beirut attracted 280 participants. Yet the developing political crisis tagged each activity with a series of logistical challenges, none of which was initially envisaged. The immediacy of the crisis inevitably deflected from policy attention to the challenges of NCDs. CONCLUSIONS: This programme to strengthen research capacity for one priority area of global public health took place as a narrow window of political opportunity was closing. The key lessons concern issues of sustainability and the paramount importance of responsively shaping a context-driven RCB.

Death, Dying, and End-of-Life Experiences Among Refugees: A Scoping Review.

BACKGROUND:: The objective of this scoping review is to identify and map the global literature on death, dying, and end-of-life experiences among refugees. The study aims at identifying gaps in the literature produced on the topic and informs areas for future research in the field. METHODS:: We included articles that met the following inclusion criteria: (1) Population: Refugees and/or internally or externally displaced individuals due to wars, conflicts, nonnatural disasters, or emergencies; (2) Setting: End-of-life phase, dying, and death that took place following the refuge or displacement and reported after the year 1980; and (3) Study Design: All types of studies including but not limited to primary studies, narrative reviews, systematic reviews, news, editorials, commentaries, opinion pieces, technical reports, and policy briefs. A systematic search of the following electronic databases: Medline, Scopus, CINAHL, and JSTOR yielded 11 153 records. The search of the United Nations High Commissioner for Refugees database Refworld retrieved an additional 7510 records. RESULTS:: Seven articles met our inclusion criteria. All articles were coauthored by scholars in universities/research institutes in high-income countries, and except for one, all were conducted in the country of the final settlement of refugees. One article adopted a qualitative approach, another article adopted a mixed-methods approach, one was a narrative review, and 4 articles were reviews of the literature. Three articles discussed access to medical/palliative care among older refugees, and 3 others addressed bereavement and death arrangements. Moreover, one article examined how transmigration and previous experiences from 2 cultural settings in home countries affect the contemplation of death and dying. IMPLICATIONS:: Research on end-of-life experiences among refugees is sorely lacking. This study raises awareness of the need for empirical data on end-of-life challenges and palliative care among refugees, thus equipping humanitarian agencies with a more explicit and culturally sensitive lens targeting those with life-limiting conditions.

Women's health and well-being in low-income formal and informal neighbourhoods on the eve of the armed conflict in Aleppo.

OBJECTIVES: To explore how married women living in low-income formal and informal neighbourhoods in Aleppo, Syria, perceived the effects of neighbourhood on their health and well-being, and the relevance of these findings to future urban rebuilding policies post-conflict. METHODS: Semi-structured interviews were undertaken with eighteen married women living in informal or socioeconomically disadvantaged formal neighbourhoods in Aleppo in 2011, a year before the armed conflict caused massive destruction in all these neighbourhoods. RESULTS: Our findings suggest that the experience of neighbourhood social characteristics is even more critical to women's sense of well-being than environmental conditions and physical infrastructure. Most prominent was the positive influence of social support on well-being. CONCLUSIONS: The significance of this study lies, first, in its timing, before the widespread destruction of both formal and informal neighbourhoods in Aleppo and, second, and in its indication of the views of women who lived in marginalised communities on what neighbourhood characteristics mattered to them. Further research post-conflict needs to explore how decisions on urban rebuilding are made and their likely influence on health and well-being.

Translation of a community palliative care intervention: Experience from West Bengal, India.

Background: The community form of palliative care first constructed in Kerala, India has gained recognition worldwide. Although it is the subject of important claims about its replicability elsewhere, little effort has gone into studying how this might occur. Drawing on translation studies, we attend to under-examined aspects of the transfer of a community palliative care intervention into a new geographic and institutional context. Methods: Over a period of 29 months, we conducted an in-depth case study of Sanjeevani, a community-based palliative care organization in Nadia district, West Bengal (India), that is modelled on the Kerala approach. We draw upon primary (semi-structured interviews and field notes) and secondary data sources. Results: We identify the translator's symbolic power and how it counteracts the organizational challenges relating to socio-economic conditions and weak histories of civil society organizing. We find that unlike the Kerala form, which is typified by horizontal linkages and consensus-oriented decision-making, the translated organizational form in Nadia is a hybrid of horizontal and vertical solidarities. We show how translation is an ongoing, dynamic process, where community participation is infused with values of occupational prestige and camaraderie and shaped by emergent vertical solidarities among members. Conclusions: Our findings have implications for how we understand the relationship between locations, institutional histories, and healthcare interventions. We contribute to translation studies in healthcare, and particularly to conversations about the transfer or 'roll out' of palliative care interventions from one geography to another.

A moment for compassion: emerging rhetorics in end-of-life care.

Compassion is an emotional response to the suffering of others. Once felt, it entails subsequent action to ameliorate their suffering. Recently, 'compassion' has become the flagship concept to be fostered in the delivery of end-of-life care, and a rallying call for social action and public health intervention. In this paper, we examine the emerging rhetorics of compassion as they relate to end-of-life care and offer a critique of the expanding discourse around it. We argue that, even where individuals 'possess' compassion or are 'trained' in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is that countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. We argue that unrealistic assumptions have been made about the role of compassion in end-of-life care and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric.

Declarations on euthanasia and assisted dying.

Declarations on end-of-life issues are advocacy interventions that seek to influence policy, raise awareness and call others to action. Despite increasing prominence, they have attracted little attention from researchers. This study tracks the emergence, content, and purpose of declarations concerned with assisted dying and euthanasia, in the global context. The authors identified 62 assisted dying/euthanasia declarations covering 1974-2016 and analyzed them for originating organization, geographic scope, format, and stated viewpoint on assisted dying/euthanasia. The declarations emerged from diverse organizational settings and became more frequent over time. Most opposed assisted dying/euthanasia.

Interventions at the end of life - a taxonomy for 'overlapping consensus'.

Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments.  It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as 'organized responses to end of life issues'. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the 'locus' refers to the space or spaces in which it is situated; the 'focus' captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways - as 'frames' (organized responses that primarily construct a shared understanding of an end of life issue) or as 'instruments' (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an 'overlapping consensus' on how interventions at the end of life can be construed, understood and assessed.

Common or multiple futures for end of life care around the world? Ideas from the 'waiting room of history'.

Around the world there is growing interest in the manner in which care is delivered to people at the end of life. However, there is little unanimity on what constitutes a 'good death' and the appropriate societal responses to the issue of delivering culturally relevant and sustainable forms of end of life care in different settings are not subjects of broad agreement. In this critical conceptual paper we focus on the emerging narratives of global palliative care and offer an assessment of their implications. We relate this to calls to improve end of life care across jurisdictions and settings, attempts to map and grade the development of palliative care provision, and to the emergence of a widely recognised global 'quality of death index'. We consider an alternative approach to framing this debate, drawn from a subaltern and post-colonial studies perspective and suggest that adopting a truly global perspective will require acceptance of the plurality of past and present local problems and issues relating to end of life care, as well as the plural possibilities of how they might be overcome. In that context, we would not aim to universalise or privilege one particular global future for end of life care. Instead of homogenising end of life interventions, we seek to be open to multiple futures for the care of the dying.

A survey of knowledge-to-action pathways of aging policies and programs in the Arab region: the role of institutional arrangements.

BACKGROUND: While population aging challenges Arab governments to ensure well-being in old age, knowledge translation is gaining support worldwide in evidence-based policymaking and service provision. This study examines the status of existing knowledge translation efforts of aging-related research in Arab countries and evaluates the additional role that institutional arrangements (such as ministry departments, national committees, etc.) play in the relationship between knowledge creation and social and health policies and programs. METHODS: Data were triangulated from two regional surveys and a supplementary desk review of academic, civil society, ministry, and UN documents. Using a set of indicators, standardized summative indices (out of 100) were generated for five constructs, namely knowledge creation, institutional arrangements, knowledge translation, and health and social policies and programs. Correlations were assessed using Spearman's rank correlation (r s), and bootstrap multiple linear regression models were used. RESULTS: Arab countries scored highest on the institutional arrangements index (median = 69.5), followed by the knowledge creation index (median = 45.9), and lowest on the knowledge translation index (median = 30.2). Both institutional arrangements and knowledge creation significantly correlated with social and health policies and programs. However, when adjusted for knowledge translation, only institutional arrangements retained a significant association with both outcomes (r s = 0.63, p value =0.009 and r s = 0.69, p value =0.01, respectively). Adjusting for institutional arrangements and knowledge creation, the association of knowledge translation with social and health policies and programs was attenuated and non-significant (r s = 0.08, p value =0.671 and r s = 0.12, p value =0.634, respectively). CONCLUSIONS: There are two key messages from this study. Firstly, institutional arrangements play a central role in aging social and health policy and program development in the Arab region. Secondly, knowledge translation paradigms in Arab countries may be deficient in factors pertinent for promoting evidence-based decision-making and policy-relevant research. These findings call for the need of strengthening institutional arrangements on aging and for promoting knowledge production that meets policy-relevant priorities.

Health system challenges for the management of cardiovascular disease and diabetes: an empirical qualitative study from Syria.

OBJECTIVES: To explore through empirical qualitative data health system barriers to effective management of cardiovascular disease and diabetes in Syria before the crisis, and how such analysis can inform the building of a post-crisis system. METHODS: Data were collected through document review, semi-structured key informant interviews, and fieldwork in clinics. RESULTS: Institutional commitment to address the increasing burden of CVD and diabetes in Syria was limited and uncoordinated. Challenges included an increasingly split healthcare system, with private provision for those who could afford it, and a residual state health sector for the majority. Public trust in the system had been declining. CONCLUSIONS: We conclude that lack of effective management of CVD and diabetes indicated weaknesses of the state and its retracting role in providing effective healthcare. Such weaknesses that existed before the crisis are now compounded by new challenges resulting from wide destruction of the health system due to the ongoing war. The rebuilding of post-conflict heath care system may benefit from insights into the structural problems of the pre-crisis system.

Health system challenges of NCDs in Tunisia.

OBJECTIVES: The objective of this study was to present a qualitative 'situation analysis' of the healthcare system in Tunisia, as it applies to management of cardiovascular disease (CVD) and diabetes. A primary concern was the institutional capacity to manage non-communicable diseases (NCDs). METHODS: Research took place during 2010 (analysis of official documents, semi-structured interviews with key informants, and case studies in four clinics). Walt and Gilson's framework (1994) for policy analysis was used: content, actors, context, and process. RESULTS: Problems of integration and coordination have compounded funding pressures. Despite its importance in Tunisian healthcare, primary health is ill-equipped to manage NCDs. With limited funds, and no referral or health information system, staff morale in the public sector was low. Private healthcare has been the main development filling the void. CONCLUSION: This study highlights major gaps in the implementation of a comprehensive approach to NCDs, which is an urgent task across the region. In strategic planning, research on the health system is vital; but the capacity within Ministries of Health to use research has first to be built, with a commitment to grounding policy change in evidence.

Health policy analysis for prevention and control of cardiovascular diseases and diabetes mellitus in Turkey.

OBJECTIVES: Current capacity of the Turkish health system is reviewed to evaluate and develop appropriate policies for cardiovascular diseases (CVD), diabetes mellitus (DM) and related risk factors. METHODS: This paper qualitatively evaluates existing policies; interviews with key informants (KIs); and rapid appraisal fieldwork in clinical settings about CVD-DM through the framework of Walt and Gilson (Health Policy Plan 9:353-370, 1994). RESULTS: Document review shows that prevention and control of CVD-DM were strongly addressed in Turkey, yet no document mentioned country-wide early detection or screening programs. KIs indicated over-fragmented management of CVD-DM by the Ministry of Health (MoH). Coordination among the MoH, organizational structure at provincial level and civil society organizations are poor where mutual trust is a significant problem according to KIs. Clinical setting findings point to a complete lack of a referral structure and a lack of follow-up, compounding the absence of functioning health information systems for patient records. CONCLUSIONS: Primary care services for CVD-DM require urgent attention, focusing particularly on the training of staff in public facilities, the integration of patient data, referrals and follow-up across all levels of the health system.