‘Exchanges’: A visual resource to inspire and support deeper conversations in the Parkinson’s community

TY - JOUR

T1 - ‘Exchanges’

T2 - 6th World Parkinson Congress

AU - Muqit, Miratul

AU - Patel, Daksha

AU - Patrick, Sarah

AU - Kocaturk, Nur

AU - Saarela, Daniel

AU - Agarwal, Shalini

AU - Shi, Gloria

AU - Carton, Bill

AU - Niven, Janet

AU - Wreford, Katrine

AU - Lawson, Daryl

AU - Keir, Ian

AU - Langlands, Sharon

AU - Donegan, Linda

AU - Knowles, Anthony

AU - Knowles, Sandra

AU - Milne, Joy

AU - Davies, Paul

A2 - Giddens, Thomas

PY - 2023/6/28

Y1 - 2023/6/28

N2 - Interactions between people with Parkinson’s (PwP), carers and researchers are often limited to research talks or visits to laboratories. These interactions are hugely beneficial to all involved and improve the understanding of research developments, but the opportunity for deeper conversations – particularly around the complexities and ambiguities of the lived experience of Parkinson’s and of the research process itself – can be limited in these settings. We have developed and co-produced ‘Exchanges’, an interpretive art card resource with drawings that depict Parkinson’s research and symptoms alongside question prompts such as “What does Parkinson’s mean to you?” to support deeper conversations between PwP, carers and researchers. Initial experiences of the art card resource being used by a person with lived experience of Parkinson’s and a researcher generated striking levels of engagement, breaking down barriers and prompting deep, quality conversations about Parkinson’s. These powerful exchanges were captured on film. We also discovered that the resource has a wider impact than originally anticipated – it is incredibly successful at prompting discussion of the emotional and physical challenges of Parkinson’s between PwP and other PwP or carers too. Unexpectedly, the resource also supported profound conversations about Parkinson’s in a group setting as well as in pairs, with participant feedback advocating future use at conferences, in support groups and clinical settings. PwPs and researchers will present their experience of ‘Exchanges’ and why this is a valuable resource, not only to support patient involvement in Parkinson’s research, but to support the Parkinson’s community as a whole.

AB - Interactions between people with Parkinson’s (PwP), carers and researchers are often limited to research talks or visits to laboratories. These interactions are hugely beneficial to all involved and improve the understanding of research developments, but the opportunity for deeper conversations – particularly around the complexities and ambiguities of the lived experience of Parkinson’s and of the research process itself – can be limited in these settings. We have developed and co-produced ‘Exchanges’, an interpretive art card resource with drawings that depict Parkinson’s research and symptoms alongside question prompts such as “What does Parkinson’s mean to you?” to support deeper conversations between PwP, carers and researchers. Initial experiences of the art card resource being used by a person with lived experience of Parkinson’s and a researcher generated striking levels of engagement, breaking down barriers and prompting deep, quality conversations about Parkinson’s. These powerful exchanges were captured on film. We also discovered that the resource has a wider impact than originally anticipated – it is incredibly successful at prompting discussion of the emotional and physical challenges of Parkinson’s between PwP and other PwP or carers too. Unexpectedly, the resource also supported profound conversations about Parkinson’s in a group setting as well as in pairs, with participant feedback advocating future use at conferences, in support groups and clinical settings. PwPs and researchers will present their experience of ‘Exchanges’ and why this is a valuable resource, not only to support patient involvement in Parkinson’s research, but to support the Parkinson’s community as a whole.

UR - https://www.scopus.com/pages/publications/85164145126

U2 - 10.3233/JPD-2399900

DO - 10.3233/JPD-2399900

M3 - Meeting abstract

SN - 1877-7171

VL - 13

SP - 348

JO - Journal of Parkinson's Disease

JF - Journal of Parkinson's Disease

IS - S1

M1 - P45.32

Y2 - 4 July 2023 through 7 July 2023

ER -