The personal experience of juvenile Huntington's disease: an interpretative phenomenological analysis of parents' accounts of the primary features of a rare genetic condition

2006 ◽  
Vol 69 (6) ◽  
pp. 486-496 ◽  
Author(s):  
JA Smith ◽  
HM Brewer ◽  
V Eatough ◽  
CA Stanley ◽  
NW Glendinning ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Personal Experience ◽  
Interpretative Phenomenological Analysis ◽  
Phenomenological Analysis ◽  
Genetic Condition ◽  
Juvenile Huntington’S Disease

scholarly journals The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe

2013 ◽  
Vol 21 (10) ◽  
pp. 1042-1048 ◽  
Author(s):  
Virginia Eatough ◽  
Helen Santini ◽  
Christine Eiser ◽  
Marie-Louise Goller ◽  
Wioletta Krysa ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Personal Experience ◽  
Juvenile Huntington’S Disease

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

2020 ◽  
Vol 10 (3) ◽  
pp. 155 ◽  
Author(s):  
Mayke Oosterloo ◽  
Emilia K. Bijlsma ◽  
Christine de Die-Smulders ◽  
Raymund A. C. Roos
Keyword(s):  
Health Care ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Health Care Professionals ◽  
Interpretative Phenomenological Analysis ◽  
Diagnostic Delay ◽  
Diagnostic Process ◽  
Delay In Diagnosis ◽  
Juvenile Huntington’S Disease ◽  
The One

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.

scholarly journals A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease

2017 ◽  
Vol 7 (5) ◽  
pp. 307-315 ◽  
Author(s):  
Amelia D Moser ◽  
Eric Epping ◽  
Patricia Espe-Pfeifer ◽  
Erin Martin ◽  
Leah Zhorne ◽  
...  
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Large Series ◽  
Juvenile Huntington’S Disease
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