Community Research and Development Information Service - CORDIS

H2020

AIDSsilences Report Summary

Project ID: 707562
Funded under: H2020-EU.1.3.2.

Periodic Reporting for period 1 - AIDSsilences (The Power of Silence: A Medical Anthropological Approach to AIDS Care Narratives)

Reporting period: 2017-01-01 to 2017-12-31

Summary of the context and overall objectives of the project

How do silences structure and surround narratives of illness and care? And how may understanding such silences improve healthcare practices? This project addresses these questions by developing theoretical and methodological tools for attending to silences in illness narratives. It does so by drawing on qualitative empirical data that concern one of the most haunting epidemics of our time: HIV/AIDS. As people with HIV/AIDS remain stigmatized in most parts of the world, and social scientific attention to their active uses of silence is emerging, it is crucially important to develop better knowledge of the different roles played by silence in AIDS care interactions. Increasing the attention to the unspoken, unspeakable and that which lies beyond articulation among social scientists, policy makers, and healthcare practitioners will therefore have huge benefits to society. The key objectives of this study are:
1. To conceptualize how silences shape AIDS care, by analyzing narratives of people living with HIV/AIDS and caregiving institutions
2. To theorize the relation between silence and narrative
3. To develop a qualitative methodology for recognizing, inquiring into, and understanding respondents’ silences
To attain these objectives, the project draws on ethnographic material gathered in AIDS care interactions in Indonesia as well as on interviews with policy makers in the field of Global Health. It particularly develops tools to theorize and interpret silences based on person-centered ethnography, narrative phenomenology, and a sustained ethical reflection on social scientific approaches of silences and care.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

During the outgoing phase of this project (hosted by Harvard University), the researcher has achieved:
1. A significant theoretical grounding and development through the consistent participation in several graduate courses and seminars, and regular conversations with highly esteemed scholars in the field of narrative, public health, and phenomenology.
2. The launching of the anthropologyofsilence.com website and weblog, which has generated broad interest and a number of excellent blogposts so far.
3. The co-organization of a well-attended panel on silences during the Annual Meetings of the American Anthropological Association in November 2017.
4. The co-organization and acceptance of a panel on care at the Annual Conference of the Association of Asian Studies in March 2018.
5. New scholarly collaborations in the fields of silence, narrative and care, leading to co-writing, co-editing a special issue collection and organizing panels at academic conferences.
6. Extended conversations and pilot interviews with scholars of public health and health care practitioners in the United States.
7. Completion of two article manuscripts that have been submitted to top-tier academic journals. One manuscript is under review, the other is accepted and scheduled for publication in March 2018. A third article manuscript will be submitted in February 2018.
8. Initial writing of ethnographic monograph manuscript on AIDS silences. An ethnographic monograph manuscript based on previous research has been submitted to a prominent American university press and is under review.
9. Two academic conference presentations and three invited academic talks.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The topic of silence has started to attract major interest both within and beyond the field of anthropology, as attested by recent publications in the field and the attention for the public website and academic panel co-organized by the researcher. The scholarly experiences during the outgoing phase have led to novel insights into the ambiguities of silences in healthcare, the strategies with which people deploy silences, and the historical and political hauntings that silences may imply. A careful scholarly consideration of the ethics of writing and interpreting silences, dependent on the social context of research, is much needed. Expected results until the end of the project include the submission/acceptance of a co-edited special journal issue on silence, the completion of a monograph manuscript, the organization of a public conference, public talk and academic workshop, the co-organization of academic panels at three academic conferences, the dissemination of a policy report, the grant application for a larger academic project, and the publication of three journal articles and two newspaper articles. Societal implications are expected in the field of AIDS care in Indonesia and beyond, as well as the prioritizing of the topic of healthcare and silence in scholarly and healthcare debates.

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