REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease
REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease
Background: people with pre-symptomatic Huntington's disease (PSHD) carry a mutant gene that causes a progressive brain disease, with their offspring at 50% risk of developing Huntington's disease (HD). People know they will develop the condition, but not when, and services are generally not designed to care for people in this anticipatory stage.
Aims: to explore the support and educational needs of people in the PSHD stage and assess their experience of attending a virtual group.
Methods: user-driven virtual sessions followed by anonymous surveys.
Findings: four main themes were identified: 1) what to expect from HD in the future; 2) tips to keep healthy; 3) how HD is impacting your life and the life of others; and 4) research update – requested at every session. Attendees described the positive impact of the group.
Conclusions: user-driven virtual group sessions show a positive impact on PSHD patients and can be a useful resource to support other people with complex diseases remotely.
Huntington's Disease, pre-symptomatic support, education, telehealth, COVID-19
Bartolomeu Pires, Sandra Martins
bac6d261-405a-4a39-9fe2-3f38deeacb22
Chaâbane, Fiona
1fc37d14-6cda-4e7a-a0b2-e636b8b604a4
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
2 April 2024
Bartolomeu Pires, Sandra Martins
bac6d261-405a-4a39-9fe2-3f38deeacb22
Chaâbane, Fiona
1fc37d14-6cda-4e7a-a0b2-e636b8b604a4
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
Bartolomeu Pires, Sandra Martins, Chaâbane, Fiona and Kipps, Christopher
(2024)
REACT-HD online group: supporting people living with pre-symptomatic Huntington's disease.
British Journal of Neuroscience Nursing, 20 (2).
(doi:10.12968/bjnn.2024.20.2.46).
Abstract
Background: people with pre-symptomatic Huntington's disease (PSHD) carry a mutant gene that causes a progressive brain disease, with their offspring at 50% risk of developing Huntington's disease (HD). People know they will develop the condition, but not when, and services are generally not designed to care for people in this anticipatory stage.
Aims: to explore the support and educational needs of people in the PSHD stage and assess their experience of attending a virtual group.
Methods: user-driven virtual sessions followed by anonymous surveys.
Findings: four main themes were identified: 1) what to expect from HD in the future; 2) tips to keep healthy; 3) how HD is impacting your life and the life of others; and 4) research update – requested at every session. Attendees described the positive impact of the group.
Conclusions: user-driven virtual group sessions show a positive impact on PSHD patients and can be a useful resource to support other people with complex diseases remotely.
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More information
Accepted/In Press date: 1 January 2024
Published date: 2 April 2024
Keywords:
Huntington's Disease, pre-symptomatic support, education, telehealth, COVID-19
Identifiers
Local EPrints ID: 498106
URI: http://eprints.soton.ac.uk/id/eprint/498106
ISSN: 1747-0307
PURE UUID: fe33f8c0-223c-4d2c-8f01-58f070c8d70e
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Date deposited: 10 Feb 2025 17:35
Last modified: 11 Feb 2025 03:03
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Contributors
Author:
Sandra Martins Bartolomeu Pires
Author:
Fiona Chaâbane
Author:
Christopher Kipps
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