Background Current UK health research policy aims to increase the number of participants entering clinical trials. With the emphasis upon increasing participation, there is a danger that the relatively small numbers of patients with Huntington's disease (HD), a neurodegenerative disease, are repeatedly requested to take part in research.
Aim The aim of this study was to investigate the attitudes and perceptions of research among people with HD and their carers. The objectives were to explore their understanding of research and their experiences during participation.
Methods Twelve participants with HD (ranging from pre-symptomatic to moderately severe HD) and ten carers were recruited to the study. All participants had participated in a clinical study and/or were part of the Euro-HD Registry study. A qualitative approach and interpretative phenomenological analysis was used for the study.
Results The main theme to emerge from the data was the substantial role that carers play in studies. Carers described not only a domestic impact but also an increased pressure due to their information-processing and decision-making role in studies. Conversely, service users appeared to play a more passive role in the research process. Nevertheless, both service users and carers reported a high level of motivation for participation in studies.
Conclusion Both service users and carers were very committed and enthusiastic about research but the increased burden on carers suggested by the study, needs to be addressed in order to maximise patient recruitment and retention to studies.
- Huntington's disease