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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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2020
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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. |
format | Online Article Text |
id | pubmed-7139393 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
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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