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Huntingtons disease

The attitudes of people with Huntington's disease and their carers to research

Purpose: The purpose of this paper is to explore the attitude and understanding of research among people with Huntington's disease (HD) and their carers, as well as their experiences of research participation. Design/methodology/approach: Semi-structured interviews were conducted with 12 participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers.

Thu, 07/20/2017 - 15:16

Capturing the Huntington's disease spousal carer experience: a preliminary investigation using the ‘Photovoice’ method

The purpose of this exploratory study was to capture and describe the experiences of family carers of Huntington's disease (HD) patients, specifically in relation to their Quality of Life (QoL). Visual representations of QoL were gathered using ‘Photovoice’. Five spousal carers photographed and described elements of their life in which they felt their QoL was being enhanced or compromised. Using content analysis, nine manifest themes were identified and tentative latent inferences were made in relation to these themes.

Thu, 07/20/2017 - 15:13