Paper Presentation
Kelly Moes
TASA Health thematic group research seminar series, 2022 Aug
TASA Health thematic group research seminar series, 2022 Aug
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Cite
APA
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Moes, K. (2022). Investigating the meaningful engagement of people with lived experience of Intracranial Hypertension in research about Intracranial Hypertension. TASA Health thematic group research seminar series.
Chicago/Turabian
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Moes, Kelly. “Investigating the Meaningful Engagement of People with Lived Experience of Intracranial Hypertension in Research about Intracranial Hypertension.” TASA Health thematic group research seminar series, 2022.
MLA
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Moes, Kelly. Investigating the Meaningful Engagement of People with Lived Experience of Intracranial Hypertension in Research about Intracranial Hypertension. TASA Health thematic group research seminar series, 2022.
BibTeX Click to copy
@conference{kelly2022a,
title = {Investigating the meaningful engagement of people with lived experience of Intracranial Hypertension in research about Intracranial Hypertension},
year = {2022},
month = aug,
organization = {TASA Health thematic group research seminar series},
author = {Moes, Kelly},
month_numeric = {8}
}
Abstract:
In this presentation, I present my findings from a critical analysis of the engagement of people with lived experience of Intracranial Hypertension in the research about the condition. It is increasingly recognised that people who live with rare disease, chronic illness and disability are involved in the research about their conditions and in the decision-making that determines the associated management and treatment practices about their lives. However, this is often a missed opportunity for research in this area, with community and individuals’ expertise often overlooked or poorly utilised.
Intracranial Hypertension is a rare and complex chronic illness. It is a neurological condition with global impairments and a significant impact on quality of life. The current landscape of the Intracranial Hypertension literature centres a clinical interpretation of the condition producing a dominant perspective that promotes the assessment of Intracranial Hypertension through health-related outcomes that does not account for the daily challenges faced by people living with it. Importantly, the barriers and facilitators to effectively support people with Intracranial Hypertension are poorly understood within this literature. A paucity of qualitative literature in this field needs to be urgently addressed to provide an in-depth understanding of the lived experience of the condition and to minimise epistemic injustice, the devaluing and dismissal of patients in their capacity as ‘experts-by-experience’.
My research identifies a broad, dynamic and global Intracranial Hypertension community eager to embrace and contribute to research, yet there is a high level of tokenistic involvement in research in this area. While research rarely engages meaningfully with lived expertise, an enormous opportunity remains to include a more diverse range of experiences. If Intracranial Hypertension were to meaningfully engage with lived expertise, it may more effectively develop a shared understanding of the condition, drive research in new directions and produce better outcomes for those living with it.
I conclude with a call for an expanded research agenda on Intracranial Hypertension in this area and note parallels that can be drawn with broader research on disability and chronic illness.
Discussion Points:
Intracranial Hypertension is a rare and complex chronic illness. It is a neurological condition with global impairments and a significant impact on quality of life. The current landscape of the Intracranial Hypertension literature centres a clinical interpretation of the condition producing a dominant perspective that promotes the assessment of Intracranial Hypertension through health-related outcomes that does not account for the daily challenges faced by people living with it. Importantly, the barriers and facilitators to effectively support people with Intracranial Hypertension are poorly understood within this literature. A paucity of qualitative literature in this field needs to be urgently addressed to provide an in-depth understanding of the lived experience of the condition and to minimise epistemic injustice, the devaluing and dismissal of patients in their capacity as ‘experts-by-experience’.
My research identifies a broad, dynamic and global Intracranial Hypertension community eager to embrace and contribute to research, yet there is a high level of tokenistic involvement in research in this area. While research rarely engages meaningfully with lived expertise, an enormous opportunity remains to include a more diverse range of experiences. If Intracranial Hypertension were to meaningfully engage with lived expertise, it may more effectively develop a shared understanding of the condition, drive research in new directions and produce better outcomes for those living with it.
I conclude with a call for an expanded research agenda on Intracranial Hypertension in this area and note parallels that can be drawn with broader research on disability and chronic illness.
Discussion Points:
- What is “meaningful” when we talk about participation/engagement in research?
- Whose voices get counted/heard more often? Who is being silenced/excluded?
- How do we expand who is considered to hold expertise in health/medical research?