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Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children

Objective: To investigate the reasons for the diagnostic delay of juvenile Huntington’s disease patients in the Netherlands. Methods: This study uses interpretative phenomenological analysis. Eligible participants were parents and caregivers of juvenile Huntington’s disease patients. Results: Eight...

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Detalles Bibliográficos
Autores principales: Oosterloo, Mayke, Bijlsma, Emilia K., de Die-Smulders, Christine, Roos, Raymund A. C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7139393/
https://www.ncbi.nlm.nih.gov/pubmed/32156063
http://dx.doi.org/10.3390/brainsci10030155
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author Oosterloo, Mayke
Bijlsma, Emilia K.
de Die-Smulders, Christine
Roos, Raymund A. C.
author_facet Oosterloo, Mayke
Bijlsma, Emilia K.
de Die-Smulders, Christine
Roos, Raymund A. C.
author_sort Oosterloo, Mayke
collection PubMed
description Objective: To investigate the reasons for the diagnostic delay of juvenile Huntington’s disease patients in the Netherlands. Methods: This study uses interpretative phenomenological analysis. Eligible participants were parents and caregivers of juvenile Huntington’s disease patients. Results: Eight parents were interviewed, who consulted up to four health care professionals. The diagnostic process lasted three to ten years. Parents believe that careful listening and follow-up would have improved the diagnostic process. Although they believe an earlier diagnosis would have benefited their child’s wellbeing, they felt they would not have been able to cope with more grief at that time. Conclusion: The delay in diagnosis is caused by the lack of knowledge among health care professionals on the one hand, and the resistance of the parent on the other. For professionals, the advice is to personalize their advice in which a conscious doctor’s delay is acceptable or even useful.
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spelling pubmed-71393932020-04-10 Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children Oosterloo, Mayke Bijlsma, Emilia K. de Die-Smulders, Christine Roos, Raymund A. C. Brain Sci Article Objective: To investigate the reasons for the diagnostic delay of juvenile Huntington’s disease patients in the Netherlands. Methods: This study uses interpretative phenomenological analysis. Eligible participants were parents and caregivers of juvenile Huntington’s disease patients. Results: Eight parents were interviewed, who consulted up to four health care professionals. The diagnostic process lasted three to ten years. Parents believe that careful listening and follow-up would have improved the diagnostic process. Although they believe an earlier diagnosis would have benefited their child’s wellbeing, they felt they would not have been able to cope with more grief at that time. Conclusion: The delay in diagnosis is caused by the lack of knowledge among health care professionals on the one hand, and the resistance of the parent on the other. For professionals, the advice is to personalize their advice in which a conscious doctor’s delay is acceptable or even useful. MDPI 2020-03-07 /pmc/articles/PMC7139393/ /pubmed/32156063 http://dx.doi.org/10.3390/brainsci10030155 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Oosterloo, Mayke
Bijlsma, Emilia K.
de Die-Smulders, Christine
Roos, Raymund A. C.
Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title_full Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title_fullStr Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title_full_unstemmed Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title_short Diagnosing Juvenile Huntington’s Disease: An Explorative Study among Caregivers of Affected Children
title_sort diagnosing juvenile huntington’s disease: an explorative study among caregivers of affected children
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7139393/
https://www.ncbi.nlm.nih.gov/pubmed/32156063
http://dx.doi.org/10.3390/brainsci10030155
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