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

Abstract

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. Data were analysed using interpretative phenomenological analysis. Findings – The emerging themes indicated that carers played a more active part in the research process while the service users adopted a more passive role. These differences gave rise to differences in their attitudes and perceptions of research. Carers described in detail their information processing and decision-making role when participation was offered and then throughout the subsequent study. They facilitated attendance, provided support, enabled the collection of correct data for the study, as well as ensuring the wellbeing of the service user throughout the research process. Service users, however, focused upon the behavioural and physical changes they experienced during the trial. Nevertheless a great level of enthusiasm for research was reported by both service users and carers. Originality/value – Research on the attitudes and experiences of people with HD and their carers is inadequate. Further research is therefore needed into the carers’ potentially considerable burden and significant role in HD research. This could then conceivably impact on the enhancement of the clinical trial experience and recruitment and retention in studies could be improved.