Deaf with Dementia Life-stories Project: Interviews in British Sign Language with Deaf People with Dementia and Their Care Partners and Focus Groups with Deaf Carers, 2015-2018

All data in this project were collected in British Sign Language (BSL) and analysed in BSL. The videos from the focus groups and the interviews cannot be uploaded as the video images cannot be pixelated. British Sign Language is a visual language with its own syntax and grammar that incorporates the whole body while communicating. To pixelate participants’ faces would completely remove the capacity to understand what is being signed. We did not produce written translations of these data for purposes of analysis, because it was unnecessary given that the researchers were fluent BSL users and also to do so would diminish the significance of the source language within the analyses we wished to undertake. Participants did not give permission for their filmed data to be shared with other researchers, given the sensitivity of the data and identifiability of themselves. There is, therefore, no raw data from the interviews and focus groups that has been deposited. We include anonymised meta data on the characteristics of participants in the study and all materials used in the study.The Deaf with Dementia Life-Stories Project was a workstream within the five-year research project (2014-2019) Neighbourhoods and Dementia study funded by the National Institute of Health Research (NIHR) and the Economic and Social Research Council (ESRC) [ES/L001772/1]. This project was carried out by researchers within the Social Research with Deaf people group (SORD) (https://sites.manchester.ac.uk/sord/) and the Dementia and Ageing Research Team (DART) (https://www.bmh.manchester.ac.uk/research/nursing-groups/dementia-and-ageing-research-team/) at the University of Manchester, UK. Deaf British Sign Language (BSL) users living with dementia and their carers face everyday challenges in accessing primary care services as these are not provided in their first language nor are these services necessarily culturally sensitive to this minority community group. Within the wider movement toward the use of life story tools as practices to support people with dementia and their carers, there are no life-story tools that have been designed specifically with the linguistic/cultural preferences of this group in mind nor any that encapsulate the histories of sign language users generally, or for those with dementia. The aims of this project were to a) explore the cultural value of storytelling within sign language communities across the world via a conceptual thematic review; b) gauge Deaf carers’ views of how they ensure they communicate effectively with Deaf people with dementia and c) investigate with Deaf people with dementia and their carers the effectiveness of using visual aids using test activities to re-connect and re-enable communication. Data were collected through repeat indivdiual interviews with Deaf sign language users with dementia and thier care partners and focus groups with Deaf carers of Deaf people with dementia. In addition, a conceptual thematic review was published on story telling and cultural practice amongst Deaf people(s) and its relationship with the development of a life story intervention for Deaf people with dementia.

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Geographic Coverage:

North West of England and South West of England

Temporal Coverage:

2016-01-01/2018-01-01

Resource Type:

dataset

Available in Data Catalogs:

UK Data Service