Abstract
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.
Highlights
Huntington’s disease (HD) is an autosomal dominant neurodegenerative disease characterized by unwanted movements, psychiatric disorders, and cognitive deterioration
We focus on the diagnostic timeline, the experiences of the parents or caregivers during the diagnostic process, and the role of the different health care providers
This study employed in-depth semi-structured interviews and interpretative phenomenological analysis (IPA), a well-established experiential approach in health and clinical psychology [17]
Summary
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.
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