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

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

doi:10.1111/j.1399-0004.2006.00624.x

Cited by 32 publications

(41 citation statements)

References 25 publications

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“…Qualitative methods are valuable when attempting to understand the participant’s perspective, especially when the phenomenon is rare. A British study employed such an approach to examine the experience of parents/primary carers of children with JHD [64]. …”

Section: Views Of Familiesmentioning

confidence: 99%

Managing Juvenile Huntington’s Disease

Quarrell

Nance²,

Nopoulos

et al. 2013

Neurodegen. Dis. Manage.

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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.

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Section: Views Of Familiesmentioning

confidence: 99%

Managing Juvenile Huntington’s Disease

Quarrell

Nance²,

Nopoulos

et al. 2013

Neurodegen. Dis. Manage.

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“…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

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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.

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“…It should therefore not simply be viewed as an approach to data analysis. Although deemed to be a ‘young’ approach to qualitative research (Larkin, Watts, and Clifton, , 105), IPA is informed by hermeneutics, phenomenology and ideography (Smith, Eatough, Stanley, et al., ), identifying that the methodology has well‐grounded theoretical underpinnings. The study reported in this article was approached via IPA, as this perspective is particularly relevant when investigating significant experiences in participants’ lives (Smith, Eatough, Stanley, et al., ).…”

Section: Methodsmentioning

confidence: 99%

The influence of the nature of children's disabilities on societal reactions experienced by their parents

Broomhead

2018

Research in Spec Educ Needs

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This paper details a qualitative study which examined the influence of the nature of children's disabilities on stigmatisation experienced by their parents. To explore stigmatisation, semi‐structured interviews were conducted with 22 parents of children with a range of disabilities. Findings highlighted that differential treatment was experienced by all parents, regardless of the nature of their children's disabilities. However, the types of reactions from others were influenced by three key factors; visibility of the child's disability, evidence of behaviour deemed to be socially inappropriate, and perceived controllability of the disability. Parents of children with behavioural, emotional and social difficulties experienced intensely negative reactions from others, whilst other parents experienced much pity. The implications of these findings for policy and practice are considered, indicating that parents may be encountering stigma solely based on the nature of their children's disabilities. The paper concludes by stressing the importance of support outlets for parents.

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

Cited by 32 publications

References 25 publications

Managing Juvenile Huntington’s Disease

Managing Juvenile Huntington’s Disease

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

The influence of the nature of children's disabilities on societal reactions experienced by their parents

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