Camic, Paul M;
Rossi-Harries, Sam;
Harding, Emma;
Harrison, Charles R;
Sullivan, Mary Pat;
Grillo, Adetola;
Brotherhood, Emilie V;
(2023)
Talking Lines: A Research Protocol Integrating Verbal and Visual Narratives to Understand the Experiences of People Affected by Rarer Forms of Dementia.
International Journal of Qualitative Methods
, 22
10.1177/16094069231176195.
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Abstract
People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies.
| Type: | Article |
|---|---|
| Title: | Talking Lines: A Research Protocol Integrating Verbal and Visual Narratives to Understand the Experiences of People Affected by Rarer Forms of Dementia |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1177/16094069231176195 |
| Publisher version: | https://doi.org/10.1177/16094069231176195 |
| Language: | English |
| Additional information: | © The Author(s) 2023. This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages |
| Keywords: | qualitative interview, line drawing, young onset dementia, arts-based research, virtual environments, family caregivers |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10170572 |
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