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Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease

We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the Unive...

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Autores principales: Harrison, Krista L., Garrett, Sarah B., Gilissen, Joni, Terranova, Michael J., Bernstein Sideman, Alissa, Ritchie, Christine S., Geschwind, Michael D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Taylor & Francis 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8896185/
https://www.ncbi.nlm.nih.gov/pubmed/35239456
http://dx.doi.org/10.1080/19336896.2022.2043077
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author Harrison, Krista L.
Garrett, Sarah B.
Gilissen, Joni
Terranova, Michael J.
Bernstein Sideman, Alissa
Ritchie, Christine S.
Geschwind, Michael D.
author_facet Harrison, Krista L.
Garrett, Sarah B.
Gilissen, Joni
Terranova, Michael J.
Bernstein Sideman, Alissa
Ritchie, Christine S.
Geschwind, Michael D.
author_sort Harrison, Krista L.
collection PubMed
description We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60–86) years and disease duration of 14.5 months (range 4–41 months). Caregivers were interviewed a median of 22  (range 11–39) months after patient death and had a median age of 59 (range 45–73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.
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spelling pubmed-88961852022-03-05 Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease Harrison, Krista L. Garrett, Sarah B. Gilissen, Joni Terranova, Michael J. Bernstein Sideman, Alissa Ritchie, Christine S. Geschwind, Michael D. Prion Research Paper We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60–86) years and disease duration of 14.5 months (range 4–41 months). Caregivers were interviewed a median of 22  (range 11–39) months after patient death and had a median age of 59 (range 45–73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers. Taylor & Francis 2022-03-03 /pmc/articles/PMC8896185/ /pubmed/35239456 http://dx.doi.org/10.1080/19336896.2022.2043077 Text en © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Paper
Harrison, Krista L.
Garrett, Sarah B.
Gilissen, Joni
Terranova, Michael J.
Bernstein Sideman, Alissa
Ritchie, Christine S.
Geschwind, Michael D.
Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title_full Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title_fullStr Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title_full_unstemmed Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title_short Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease
title_sort developing neuropalliative care for sporadic creutzfeldt-jakob disease
topic Research Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8896185/
https://www.ncbi.nlm.nih.gov/pubmed/35239456
http://dx.doi.org/10.1080/19336896.2022.2043077
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