Regarding Aid: The photographic situation of humanitarianism

Since the invention of photography, the medium has played an increasingly central role in shaping spectators’ imagination of distant suffering and calamitous experiences. The discourse of humanitarianism has evolved alongside photography and has relied on the medium to give it shape. Indeed, humanitarianism is and always has been a photographic situation, which is to say, photography has played and continues to play a significant role in constituting the very terms of humanitarianism, including how it is referenced, conceived, understood, and practiced. This dissertation is concerned with the historical role of photography in shaping the humanitarian imagination, as well as the ways the medium has given form to and mediated the relations between its central actors. It also argues that knowing this history is crucial for advancing humanitarian photography and humanitarian relations writ large. Regarding Aid: The photographic situation of humanitarianism takes a cultural history approach that enables an exploration of the way in which photography can present links to the past, revealing the origins and the longstanding nature of some of the practices and debates around humanitarian photography. Using a variety of visual theories, I define photography as an event rather than a technology for producing pictures. The dissertation is built around three case studies: 1) Henry Dunant’s graphic language in A Memory of Solferino; 2) Lewis Hine’s European photographs for the American Red Cross taken during and immediately after the First World War; and, 3) a journalist’s photograph of the French army in Rwanda during the 1994 genocide which is prominently used in a memorial site. These case studies allow for an exploration of photography’s role in altering people’s perceptions with regard to distant suffering, in focusing on particular types of subjects, and in mediating humanitarian relations. I examine the ways in which humanitarian actors and Western spectators have been prioritized in aid discourse at the expense of the objectified suffering “other,” but coinciding with a recent movement within the humanitarian ecosystem, I also explore the way that photography might reshape aid in more collaborative and de-imperialized ways

Addressing obstacles to the inclusion of palliative care in humanitarian health projects: a qualitative study of humanitarian health professionals’ and policy makers’ perceptions

© 2020, The Author(s). Background: Humanitarian non-governmental organizations provide assistance to communities affected by war, disaster and epidemic. A primary focus of healthcare provision by these organizations is saving lives; however, curative care will not be sufficient, appropriate, or available for some patients. In these instances, palliative care approaches to ease suffering and promote dignity are needed. Though several recent initiatives have increased the probability of palliative care being included in humanitarian healthcare response, palliative care remains minimally integrated in humanitarian health projects. Methods: We conducted a qualitative study using interpretive description methodology to investigate humanitarian policy-makers’ and health care professionals’ experiences and perceptions of palliative care during humanitarian crises. In this article, we report on the analysis of in-depth interviews with 24 participants related to their perceptions of obstacles to providing palliative care in humanitarian crises, and opportunities for overcoming these obstacles. Among the participants, 23 had experience as humanitarian health professionals, and 12 had experience with policy development and organizational decision-making. Results: Participants discussed various obstacles to the provision of palliative care in humanitarian crises. More prominent obstacles were linked to the life-saving ethos of humanitarian organizations, priority setting of scarce resources, institutional and donor funding, availability of guidance and expertise in palliative care, access to medication, and cultural specificity around death and dying. Less prominent obstacles related to continuity of care after project closure, equity, security concerns, and terminology. Conclusion: Opportunities exist for overcoming the obstacles to providing palliative care in humanitarian crises. Doing so is necessary to ensure that humanitarian healthcare can fulfill its objectives not only of saving lives, but also of alleviating suffering and promoting dignity of individuals who are ill or injured during a humanitarian crises, including persons who are dying or likely to die

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

© 2021, The Author(s). Background: This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis. Discussion: There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker’s research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution. Conclusions: This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant

When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results

<p>Abstract</p> <p>Background</p> <p>Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.</p> <p>Methods</p> <p>This paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.</p> <p>Results</p> <p>We advance three insights: First, the communication of individual research results makes research practices <it>seem </it>like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.</p> <p>Conclusion</p> <p>Our findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and <it>should</it>, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.</p

Opportunities, limits and challenges of perceptions studies for humanitarian contexts

© 2016 Canadian Association for the Study of International Development (CASID). This article aims to advance understanding and discussion of perceptions studies as a method for strengthening humanitarian performance. Perceptions studies are qualitative studies produced for and often by humanitarian organisations, based on analysis of local perceptions of humanitarian efforts. While these studies are normatively asserted as valuable within the humanitarian sector, there has been no synthesis to date of their potential and limitations. This critical review of 59 perceptions-related documents responds to that gap, outlining key assertions of the value added and challenges of using perceptions studies in humanitarian work. While the objective is to inform and strengthen future use of this method, the perceptions literature also points to significant tension between this qualitative method and dominant expectations in humanitarian monitoring and evaluation

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

Abstract Background This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis. Discussion There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker’s research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution. Conclusions This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant

Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis

Abstract Wars, disasters, and epidemics affect millions of individuals every year. International non-governmental organizations respond to many of these crises and provide healthcare in settings ranging from a field hospital deployed after an earthquake, to a health clinic in a longstanding refugee camp, to a treatment center during an infectious disease outbreak. The primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. We undertook an interpretive description study to investigate humanitarian policy-maker and care providers’ experiences and perceptions of palliative care during humanitarian crises. In this paper, we report on interviews with 23 health professionals, 11 of whom also had experience as policy-makers within a humanitarian organization. We use the concept of moral experience as an analytic lens: participants’ experiences of values that they held to be important being realized or thwarted as they responded to the needs of patients who were dying or likely to die. We identified five themes related to participants’ moral experiences, all of which relate to values of compassion in the provision of care, and justice in accessing it. (1) Participants described intervening to ease the suffering of dying patients as an inherent aspect of humanitarianism and their duty as health professionals. (2) Participants also expressed that upholding dignity was of critical importance, stemming from a recognition of shared humanity and as an act of respect. (3) Since humanitarian action is provided in situations of scarcity, prioritization is inescapable. Acknowledging the primacy of curative care in emergencies, participants also emphasized the importance of ensuring that care for the dying was attended to, including during triage. (4) Participants reported working within and pushing against systemic constraints such as legal or logistical barriers to opioids, lack of guidelines, and conflicting views with colleagues. (5) Given the stakes involved, participants felt a heavy weight of responsibility and described their challenges in carrying it. These findings illuminate experiences responding to patients who are dying or likely to die, and how these connect with the values of humanitarian health professionals, sometimes resulting in dissonance between values and actions. They also point to the need to make more space for palliative, alongside curative, approaches to care in situations of humanitarian crises, ideally by further integrating them

Palliative care in humanitarian crises: a review of the literature

Abstract This paper presents findings from a systematic review of the literature (2005–2017) on palliative care in humanitarian crises (e.g., disasters, armed conflicts, epidemics). This review set out to describe palliative care needs, practices, barriers, and recommendations in humanitarian crisis settings. It contributes to current discussions within the field of humanitarian healthcare aimed at clarifying whether or not and how best to respond to palliative care needs in humanitarian crises. Analysis of 95 peer-reviewed and gray literature documents reveal a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care. These findings suggest that more research and open discussion on palliative care in humanitarian crises are needed. This review contributes to defining palliative care needs in humanitarian crises, building consensus on humanitarian healthcare organizations’ ethical responsibilities towards individuals and families with palliative needs, and developing realistic and context-appropriate policies and guidelines