Reducing the burden of caregivers in Huntington’s by using an online interventional neuropsychological approach: a pilot study Reduzindo a sobrecarga dos cuidadores na doença de Huntington usando uma abordagem neuropsicológica interventiva online: um estudo piloto

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dc.contributor.authorSantos T.H.
dc.contributor.authorPantaleao F.N.
dc.contributor.authorMachado T.N.
dc.contributor.authorLuiz L.O.
dc.contributor.authorCapato T.T.C.
dc.date.accessioned2024-09-01T06:16:51Z
dc.date.available2024-09-01T06:16:51Z
dc.date.issued2024
dc.description.abstract© 2024, Associacao Arquivos de Neuro-Psiquiatria. All rights reserved.Huntington’s disease (HD) is a hereditary, neurodegenerative disease characterized by motor, cognitive, and behavioral issues. As the disease progresses, people become dependent on their caregivers leading to a significant burden. There is a lack of effective neuropsychological intervention to support this population. Objective: To develop an online neuropsychological intervention and evaluate its effects in decreasing the HD caregiver burden. Methods: This qualitative pilot study was conducted online during the COVID-19 pandemic in Brazil. We selected a convenience sample of five informal caregivers of HD patients (mean 46.2 years old). At baseline, participants were assessed via an individual online neuropsychology interview/screening, covering demographic data. Subsequently, we conducted 20 online 90-minute sessions of the psychological consultation over 12 months. Each session was structured in three stages: 1) Welcoming; 2) Breathing and mindfulness practice; and 3) Discussion of themes about the group’s needs based on the main complaints. A second intervention assessment was applied. Results: None of the caregivers were provided with details about HD at the time of diagnosis and later care. The necessity to care for a person with a rare genetic disease was added to caregivers’ already-existing working routine and home services, causing a symptom of overload. After the neuropsychological intervention, all participants reported feeling less burdened by caring, improved self-care and conflict resolution with the person with HD through expanding behavioral repertoire focused on emotions and communication. Conclusion: Online neuropsychologic intervention can reduce the burden of HD caregivers. More comprehensive studies should investigate these findings.
dc.description.volume18
dc.identifier.doi10.1590/1980-5764-DN-2023-0118
dc.identifier.issnNone
dc.identifier.urihttps://dspace.mackenzie.br/handle/10899/39285
dc.relation.ispartofDementia e Neuropsychologia
dc.rightsAcesso Aberto
dc.subject.otherlanguageCaregiver Burden
dc.subject.otherlanguageHuntington Disease
dc.subject.otherlanguagePatient Care Team
dc.subject.otherlanguageRehabilitation
dc.subject.otherlanguageTelerehabilitation
dc.titleReducing the burden of caregivers in Huntington’s by using an online interventional neuropsychological approach: a pilot study Reduzindo a sobrecarga dos cuidadores na doença de Huntington usando uma abordagem neuropsicológica interventiva online: um estudo piloto
dc.typeArtigo
local.scopus.citations0
local.scopus.eid2-s2.0-85200419817
local.scopus.updated2024-10-01
local.scopus.urlhttps://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85200419817&origin=inward
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