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Paper short abstract:

This analyses ethical concerns of ECD based strategy in the fight of chronic malnutrition in rural contexts in UNICEF programs. Social anthropology allows to emerge and going across dilemmas of the field work on sensitive issues re-structuring the cultural acceptability of the diversity.

Paper long abstract:

Combating malnutrition in rural Africa exposes the humanitarian worker and social anthropologist to a complex dynamic in which scientific rigor, the need for investigation and data collection are grafted onto the professional ethics and discretion of the person.

Fieldwork is practised with victims of complicated delivery and / or with cognitive delays due to chronic malnutrition, mothers with no schooling experience. The operator finds himself to reveal and negotiate sensibilities, meanings, a-priori mental patterns to play them in the daily relationship with the communities

Ethics goes beyond sharing of methods, tools and results, to become an essential dimension of the work itself, it innervates practice and intimate knowledge of anthropology work and the humanitarian impulse.

I found that talking about myself, about my frailties builds a common ground, a shared language, a re balancing of experiences that has a positive impact on families and on outcomes and on the quality of the collected information.

Re-directing anthropological work on the basis of exchange allows the communities involved to contextualise personal critical situation (the child with deficit, malnourished, sometimes socially stigmatised), re-structure their symbolic and social contents and elaborate strategies of acceptance, coexistence and resilience.

In rural Tanzania, the intervention of Doctors with Africa CUAMM and UNICEF in the southern regions aimed at sensory stimulation impacts hundreds of thousands of families. Crossing the ethical dilemma is essential in the toolbox of the social anthropologist, bringing the question of the ethics back to the centre of the scientific debate, to become epistemological the key to interpret the results of its own research.

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Paper short abstract:

In my presentation, I discuss the peculiarities of the ethical process, the moral conundrums and the disciplinary restrictions that a medical anthropologist faces in carrying ethnographic research involving people with dementia in Scotland, UK.

Paper long abstract:

Fieldwork has always been envisioned in ethnographic research as open, interceding surprise, spontaneity and 'accidents' in order to create grounded theories and anthropological knowledge. While this is not excluded in clinical research, the ethical and legal approvals that are required in most Western countries for medical anthropological research in general and with adults with incapacity of consenting in particular frame a different path of getting into the field. The process of getting ethical approvals, without which no research task can be undertaken, follow the so-called clinical gold standard of research. This is characterised by huge bureaucracy; a labyrinthic following of rules, responsibilities and regulations that are passed between various bodies, which slow down the process; as well as a conceptual envisioning of what should be done (the clinical trial model) which contradicts the very core of anthropological endeavour. In my presentation, I discuss the peculiarities of the ethical process, the moral conundrums and the disciplinary restrictions that a medical anthropologist faces in carrying research involving people with dementia in Scotland, UK. I follow my own experience of getting the ethical approvals for carrying ethnographic research with people living with dementia in care facilities and therapy-animals, as well as accounts from fellow social scientists facing similar difficulties. I further discuss how ethical codes of our discipline are contested by these ethical regulations and how we, as social scientists, can and should contribute to a decongestion of the ethical approval system that endanger ethnographic research involving human participants cognitively impaired.

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Paper short abstract:

When a participant can remember and narrate their experiences, they are seen as owning this information. But when experience cannot be filtered through memory, but is observed and recorded directly by the researcher, biomedically informed ideas about what constitutes participation are problematic.

Paper long abstract:

When a research participant can't remember their past experiences the researcher becomes more directly involved in the act of remembering - information relating to the experience is not filtered through the participant's memory. However documenting experiences in-the-moment poses an ethical challenge for the researcher. The experiencing person does not exist in isolation, but is involved in interaction and relationship with others. This relational nature of experience is difficult to fit into the dominant understanding of the research participant as individuated, self-determined, context-independent, and fully able to remember their past. A biomedically-informed vision of research sees participation as occurring entirely within the cognitive and bodily boundaries of the individual, and this shapes how ethical review boards approach the issue of consent. When a participant can remember and narrate their experiences, they are seen as unproblematically owning this information - even when their narrative may feature information about other people. However this becomes an ethical problem when the act of remembering an experience is carried out by the researcher, not the participant, and so information about other people in the participants' life is recorded directly by the researcher, and not filtered through the participants' memory. Drawing on research into the ethics of ethnographic research with people who have dementia and who lack capacity, we discuss this issue with reference to different understandings of personhood and the concept of consent, and call for a more pragmatic approach to the ethical challenges of ethnography in care institutions.

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Paper short abstract:

I discuss the tensions between the desirability of reproducing marginalized perspectives and the necessity for ethical protection. How to reach the marginalized 'other' in an inclusive way, and whose story the resulting ethnographic account really tells?

Paper long abstract:

I focus on a study of disabled people and their stories further analysed, interpreted and written to ethnographic account as a part of collaborative and inclusive research process. The process creates multiple layers of interpretations as well as barriers that hinder the possibility to hear and tell the personal accounts. However, interpretive layers are needed in order to protect the privacy of those who participate in research. Anthropological research must adhere to laws and ethical committee regulations, but the risk is that protecting informants and the members of their social environments can become overprotection, and bring further marginalization. When research aims in illuminating the life of 'the other' we cannot afford excluding the already marginalized groups from research. I discuss the tensions inherent in this contradiction: the desirability of reproducing perspectives of the othered in a way that enables us all to relate to their experiences and the necessity for ethical protection. I argue that analytical tools and methods for collaborative writing are available to blur the roles of researchers and their informants throughout the research process. These tools also enable researchers to write ethnographic stories that provide a chance to understand the everyday lives of those deemed deviant in relation to the supposed 'normal'. I will talk about my experiments with these tools which utilize methods of collaborative ethnography and inclusive research.

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Paper short abstract:

This paper explores the challenges encountered when writing ethnography based on fieldwork with people with dementia in north-east Italy. How the disciplinary ethical requirements of not doing harm can be met, when no prospective research ethics or legal regulations are in place?

Paper long abstract:

Not to do harm is mandatory ethical requirement of any anthropological fieldwork product. How do we satisfy this condition when writing ethnographic stories about people who live with dementia? In our ethnographic reporting, oftentimes there are competing interests and agendas: that of caregivers, gatekeepers, participants with dementia, the researcher. Who decides what doing harm means or who is the one not to be harmed, especially when no prospective research ethics or legal regulations are in place?

We will seek answers to these questions, by exploring the challenges and possibilities of choice encountered by one of the authors during her ethnographic research - in a north-east Italian town- where she conducted fieldwork with participants living with dementia, their families and two local institutions that cater for them. In our discussion of the dilemmas encountered by this author in the writing-up phase, we will address the following issues: how to ethically interpret consent in a context where consent is not very clear cut and no ethical board regulates anthropological research on dementia? In such context, how (any further) consent should be obtained and from whom? Moreover, how to present the stories of local experts who really mean well, or of individuals who are well-meaning care-givers? For example, how to write about the care-givers or local experts who gave the ethnographer access to the field and whose reputation or careers may be at stake if exposed to anthropological analysis, not because the described behaviors represent "fallacy of care", but because their approach is only one of possible ways of making sense of dementia

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Paper short abstract:

The paper will explore the ambiguous ethical implications of doing ethnography in support groups for dementia in Northern Italy, before and during the pandemic. I will discuss how to avoid marginalizing cognitively impaired people or denying carers' feelings or exacerbating tensions between them.

Paper long abstract:

This paper aims to explore the ethical implications of conducting ethnographic research in caregiver support groups for dementia and Alzheimer's Café in Northern Italy. In those contexts, where the sharing of experiences is considered necessary for learning how to deal with the daily-life problems in a confidential and private place, people often resist the research imperative of generalizing personal experiences to a common experience and also refuse what they consider as useless uniform and abstract conceptions of illness and care, often present in heroic or tragic narrations. Furthermore, researching in low-threshold support services that set low control on users without clear ethical guidelines can result in the ambiguity of ethical principles to follow for not marginalizing cognitively impaired sick people or denying carers' feelings or exacerbating tensions between them. At the same time, this ambiguity opens up space to re-negotiate an ethnographic method that recognizes the value of individual experience and the travails of the researcher's emotional labor while stimulating the researcher and participants to rethink the construction of socially established roles. This paper will engage all these issues as well as the contemporary changes brought by the pandemic in terms of methodology and ethnographic ethical implications.

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Paper short abstract:

Whereas anthropological analyses steadily embrace an ethics of dwelling, ethical procedures are often stuck in the grammar of mores. This paper will discuss the real-time consequences of pursuing an onto-ethico-epistemological entanglement in the design of research ethics with people with dementia.

Paper long abstract:

In their analysis of lived experience, anthropologists shift steadily to an ethics of dwelling and affirm the epistemic value of following embodied negotiations over mapping moral prescripts. Ethical procedures, however, tend to be frozen in the grammar of mores, rely on the identification of in/able participants and the confinement of ethnographic accountability, especially in research with 'vulnerable' selves. People with dementia are therefore often substituted by past, or even general 'selves', by kin or caregivers, hence re-affirming their inability to act 'properly' in this condition. Whereas analyses become increasingly emic and symmetric, research ethics are lagging behind in this regard.

This paper discusses the consequences of taking an onto-ethico-epistemological entanglement seriously, and acknowledge that, as the hyphens express permanent co-creativity, also research ethics is co-emergent. A diary kept during the launch of research, where trust still needs to be gained and promises and compromises tend to be made, documents the emotions, conflicts, potentials and solutions that come with the realization of scientific and human endeavors to radicalize response-ability in dementia research ethics. Haunting questions disrupt the 'workplan' if all becomes entangled, affective and processual: Is translating an ethics of dwelling into ethical procedures feasible, even desirable? Can an onto-ethico-epistemology produce realist and comfortable research situations for people with dementia and their peers? Is it reproducible? Is it potentially violent to participants, caregivers and institutions, to disrupt 'good practices' with uncertainty and open-endedness? If ethics is situational and multiple, as is dwelling, how far can we follow without being lost?