Misdiagnosed and misunderstood’: Insights into rarer forms of dementia through a stepwise approach to co-constructed research poetry
Journal article
Camic, P.M., Sullivan M.P., Harding, E., Gould, M., Wilson,L., Rossi-Harries,S., Grillo, A., McKee-Jackson, R., Cox, S.M., Stott, J., Brotherhood,E. V., Windle, G. and Crutch, S.J. 2024. Misdiagnosed and misunderstood’: Insights into rarer forms of dementia through a stepwise approach to co-constructed research poetry. Healthcare. 12 (485), pp. 1-34. https://doi.org/10.3390/healthcare12040485
Authors | Camic, P.M., Sullivan M.P., Harding, E., Gould, M., Wilson,L., Rossi-Harries,S., Grillo, A., McKee-Jackson, R., Cox, S.M., Stott, J., Brotherhood,E. V., Windle, G. and Crutch, S.J. |
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Abstract | This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders’ verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people’s experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals’ responses reinforced poetry’s capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training. |
Keywords | Non-memory led dementia; Young onset dementia; Care-partners (care-partner and carer are used interchangeably in this paper); Carers; Caregivers; Healthcare professionals; Virtual environments; Qualitative; Arts and health |
Year | 2024 |
Journal | Healthcare |
Journal citation | 12 (485), pp. 1-34 |
Publisher | MDPI |
ISSN | 2227-9032 |
Digital Object Identifier (DOI) | https://doi.org/10.3390/healthcare12040485 |
Official URL | https://www.mdpi.com/2227-9032/12/4/485 |
Funder | Economic and Social Research Council (ESRC) |
Publication dates | |
17 Feb 2024 | |
Publication process dates | |
Accepted | 10 Feb 2024 |
Deposited | 28 Feb 2024 |
Accepted author manuscript | File Access Level Open |
Publisher's version | License File Access Level Open |
Supplemental file | License File Access Level Open |
Supplemental file | License File Access Level Open |
Output status | Published |
https://repository.canterbury.ac.uk/item/97350/misdiagnosed-and-misunderstood-insights-into-rarer-forms-of-dementia-through-a-stepwise-approach-to-co-constructed-research-poetry
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License: CC BY 4.0 | ||
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Supplemental file
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File access level: Open |
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License: CC BY 4.0 | ||
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