The Impact of Juvenile Huntington's Disease on the Family

Brewer, Helen; Eatough, Virginia; Smith, Jonathan A.; Stanley, Cath; Glendinning, Neil W.; Quarrell, Oliver

doi:10.1177/1359105307084307

Cited by 34 publications

(45 citation statements)

References 18 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The parents described denial and, afterwards, being aware something was wrong with their child. This denial and awareness are clear phenomena mentioned in previous studies on JHD [13][14][15][16]. The most commonly perceived reasons for delayed diagnosis reported in an Australian survey among parents of children living with rare diseases was the lack of knowledge among health professionals [18].…”

Section: Discussionmentioning

confidence: 83%

See 1 more Smart Citation

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

et al. 2020

View full text Add to dashboard Cite

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.

show abstract

Section: Discussionmentioning

confidence: 83%

“…The psychosocial impact and personal experience of parenting a child with JHD have been described in earlier studies [13][14][15][16]. They describe the denial of parents at first, but also the awareness something is wrong with their child.…”

Section: Introductionmentioning

confidence: 97%

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

et al. 2020

View full text Add to dashboard Cite

show abstract

“…Carers also spoke of the slow and relentless nature of the condition. Aspects of helpful and unhelpful support and of feeling isolated were described in separate reports [58,65]. A study employing the same methodology to examine the experiences of parents in different European countries has recently been completed and reports similar findings [66].…”

Section: Views Of Familiesmentioning

confidence: 99%

Managing Juvenile Huntington’s Disease

Quarrell

Nance²,

Nopoulos

et al. 2013

Neurodegen. Dis. Manage.

View full text Add to dashboard Cite

SUMMARY Huntington’s disease (HD) is a well-recognized progressive neurodegenerative disorder that follows an autosomal dominant pattern of inheritance. Onset is insidious and can occur at almost any age, but most commonly the diagnosis is made between the ages of 35 and 55 years. Onset ≤20 years of age is classified as juvenile HD (JHD). This age-based definition is arbitrary but remains convenient. There is overlap between the clinical pathological and genetic features seen in JHD and more traditional adult-onset HD. Nonetheless, the frequent predominance of bradykinesia and dystonia early in the course of the illness, more frequent occurrence of epilepsy and myoclonus, more widespread pathology, and larger genetic lesion means that the distinction is still relevant. In addition, the relative rarity of JHD means that the clinician managing the patient is often doing so for the first time. Management is, at best, symptomatic and supportive with few or no evidence-based guidelines. In this article, the authors will review what is known of the condition and present some suggestions based on their experience.

show abstract

“…Key findings included: how families experienced isolation and a lack of understanding about JHD; how many parents were aware that something was wrong with their child; and perceptions of helpful and unhelpful forms of social support from families, friends and health-care professionals. [11][12][13] The study reported here aims to develop and extend the existing understanding of the personal experience of families living with a child with JHD; how they think, feel and manage the challenges that face them. The study recruited parents from four European countries: Italy, The Netherlands, Poland and Sweden.…”

Section: Introductionmentioning

confidence: 99%

“…IPA has been employed in a number of studies examining psychosocial issues in genetics (see, eg, references [15][16][17] in addition to the previous work on JHD. [11][12][13] …”

Section: Introductionmentioning

confidence: 99%

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

et al. 2013

Self Cite

View full text Add to dashboard Cite

The study reported here presents a detailed description of what it is like to parent a child with juvenile Huntington's disease in families across four European countries. Its primary aim was to develop and extend findings from a previous UK study. The study recruited parents from four European countries: Holland, Italy, Poland and Sweden,. A secondary aim was to see the extent to which the findings from the UK study were repeated across Europe and the degree of commonality or divergence across the different countries. Fourteen parents who were the primary caregiver took part in a semistructured interview. These were analyzed using an established qualitative methodology, interpretative phenomenological analysis. Five analytic themes were derived from the analysis: the early signs of something wrong; parental understanding of juvenile Huntington's disease; living with the disease; other people's knowledge and understanding; and need for support. These are discussed in light of the considerable convergence between the experiences of families in the United Kingdom and elsewhere in Europe.

show abstract

The Impact of Juvenile Huntington's Disease on the Family

Cited by 34 publications

References 18 publications

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

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

Managing Juvenile Huntington’s Disease

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

Contact Info

Product

Resources

About