What is it about?
Services are not prepared to support people before they develop symptoms, but there are many conditions where people live knowing they are at risk or are in a pre-symptomatic stage. This is the case for a rare hereditary neurological diseases called Huntington's Disease. We wanted to know how best to support a group of people living in pre-symptomatic stages of Huntington's, via an online group, during the COVID-19 pandemic.
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Why is it important?
We live in a world with limited resources and generally not flexible enough to accommodate people's needs at different stages of a disease. But in reality a person's needs for support and education vary considerably depending in what part of the journey they are at. With our project, we were able to identity the needs of people living in pre-symptomatic stages, and how healthcare services may be able to address these, using a remote support group. Our intervention showed a positive impact and we believe it can be a useful resource to support other people with complex diseases remotely.
Perspectives
People living at risk or "waiting" for a disease to manifest have specific and complex needs that deserve to be met by healthcare services. We can do this creatively and without adding to much strain on the working force, by maximising the use of technology. This was a co-designed support and educational group delivered during the COVID-19 pandemic, that had a positive impact on patients and on their informal caregivers.
Sandra Bartolomeu Pires
University of Southampton
Read the Original
This page is a summary of: REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease, British Journal of Neuroscience Nursing, April 2024, Mark Allen Group,
DOI: 10.12968/bjnn.2024.20.2.46.
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