Life journeys: The role of interior dialogue and expression in negotiating terminal illness

DOI

Data, including video and audio recordings, including of (i) people’s everyday lives and activities, and (ii) performative fieldwork techniques, that was generated through a series of methods (outlined in the methodology section) that were developed as part of the research project to provide empirical and data about the content and character of people’s inner dialogues in relation to different environments including (i) domestic space (ii) public space, and (iii) material/non-human objects, (iv) therapeutic activities.Life Journeys researches and represents the process by which people diagnosed with a life threatening condition reclaim meaning, engage with society and establish a future while living with bodily instability and the possibility of death. In particular it aims to gain a better understanding of the role of inner dialogue and expression in negotiating the disruption of illness and make critical life decisions, eg considering treatment, suicide or radical life changes. Although the research is with persons with HIV/AIDS, the research has direct theoretical and practical applications for understanding how persons maintain well-being, healthcare policy and for other illnesses such as cancer. To enable this the researcher will re-establish contact with persons living with HIV/AIDS - who he worked with during his original doctoral research in the 1990s, when AIDS was seen as a death sentence -in order to understand how people have learnt to maintain a meaningful existence while living with terminal illness.This will involve developing a new set of methods for researching the ongoing streams of inner speech, expression and imagination when living with illness.

A set of research methods were developed, implemented and written up that use audio-visual technology, and which were specifically developed in order to research, represent and understand people’s unexpressed thoughts, perception and experiences while living with illness. This is a subject about which there is little, if any, detailed ethnographic data. A unifying focus was placed upon people’s daily activities in order to provide empirical and data about the content and character of people’s inner dialogues in relation to different environments including (i) domestic space (ii) public space, and (iii) material/non-human objects, (iv) therapeutic activities. Primary research data and insights into experiences of illness were generated through the development of various collaborative fieldwork techniques whereby subjects would carry out their habitual activities as normal, or in relation to specific subjects and mutual areas of interest and concern, for example while narrating outloud their thoughts as they emerged in real time into a small attached microphone, by narrating at prescribed intervals throughout the day or whenever a specific issue emerged into consciousness (eg HIV, death, etc). These techniques, and the data is produced by them, has been shown to be of interest and use to different disciplines and in relation to subjects other than illness, including for the study of social psychology, urban life, performance art, and film and media. Walking Fieldwork. A fieldwork technique aimed at understanding the relationship between the moving body, illness and people’s habitual material environments. Briefly put, people would map out their daily movements and actions (e.g. in relation to work, daily chores, looking after their children). I would then accompany people in real time as they carried out their daily practices, while they simultaneously articulate their corporeal experience to me in real time so as to understand the situated phenomenology of the ill body and the accompanying streams of thought, mood and emotion. Performative Fieldwork Encounters This method was developed to understand the relationship between places and memory. It uses walking, narration and photography to create a different relationship between people and their surroundings. A person is asked to walk around their familiar surroundings narrating their thoughts, emotions and memories into a voice recorder, while a second person (also HIV+) interjects, asks questions and takes photographs, thereby creating a recorded dialogue in which transient thoughts and memories are brought into the public domain and reflected upon. At a point agreed upon by the two participants, the roles are reversed and the narrator becomes the photographer and vice versa. The method means both women can identify with and ask questions about each other’s experiences that the researcher may not be able to. This also means the questions they ask, and research data this generates, emerges out of their own embodied experience of HIV⁄AIDS and establishes a field of inquiry that is of concern and interest to them, rather than being directed by anthropological presuppositions and theory. Other possible combinations can be used to change the dynamic of this type of collaborative fieldwork method. For example, one can facilitate a dialogue between persons with similar categorical identities, with radically different backgrounds or who are ‘strangers’ to each other so as to require them to articulate themselves without relying upon the shared, often unspoken, understandings that exist between familiar persons. Dramatisations of Being A collaborative attempt to understand the consciousness of persons living with illness that uses re-enactment to attempt to understand the thought processes by which a person negotiates critical moments in their life. The aim is to offer an ethnographic account of how lived experience is mediated by complex moral or religious negotiations, intense emotions and repetitive or rapidly shifting thoughts. In order to get a sense of the general thoughtscape of the wider population a further method was deployed for which more than 100 interior dialogues of random strangers were collected as they moved around the city. The city was into different zones of thought, eg streets, bridges, cafes, squares, transport, and I stood at different points in the city and asked persons what they were thinking about in the moment immediately before I approached them. I then invited them to wear a small microphone and narrate the stream of their thoughts as they continued their journey or activity. This particular method was developed and refined during the course of the research and has had substantial and wide-ranging impact and has been reported on widely in the international media. As with any exploratory project and especially one that experiments with methods, important knowledge was generated by those methods that were attempted but did not work. The most ambitious of these was an attempt to do simultaneous, choreographed ethnography in multiple places. Here I programmed all my informants mobile phones to beep at five synchronised intervals during the course of a single day, at which point they would voice record what they were thinking in that moment into the phone and use it to take a photograph of the location and/or activity they were engaged in. This method did not work because the technical aspect interrupted the stream of thought and by the time they had found the phone, switched on the camera app, found the recording button etc, the flow was gone. A scaled down version with single individuals was also attempted with mixed results. However this method has been taken up by Channel 4 for a series on love and marriage that aired in July 2015.

Identifier
DOI https://doi.org/10.5255/UKDA-SN-851958
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=e1b461485ba05f44853acaa2daf91ecb9752f597d26bb055f3a82de6a4dbb148
Provenance
Creator Irving, A, University of Manchester
Publisher UK Data Service
Publication Year 2016
Funding Reference Economic and Social Research Council
Rights Andrew Irving, University of Manchester; The Data Collection only consists of metadata and documentation as the data could not be archived due to legal, ethical or commercial constraints. For further information, please contact the contact person for this data collection.
OpenAccess true
Representation
Language English
Resource Type Audio; Other; Text; Video
Discipline Social Sciences
Spatial Coverage New York City; United States