What motivates patients and carers to participate in dementia studies?
Emma Law Nurse and manager, Scottish Dementia Clinical Research Network, Murray Royal Hospital, Perth
Tom C Russ Clinical research fellow, Alzheimer Scotland Dementia Research Centre, University of Edinburgh
Peter J Connelly Consultant old age psychiatrist, Murray Royal Hospital, Perth
Emma Law and colleagues used the participation chain model to analyse why people took part in research, and why they might not want to co-operate in future
Aim The aim of this study was to explore what motivates people to participate in dementia research.
Method Three focus groups, attended by carers and people with dementia who had already volunteered to take part in dementia research, were used to explore motivation. Their thoughts and feelings about brain tissue donation were also explored. An adaptation of the participation chain model was used. A fourth focus group was given a supplementary questionnaire examining use of resources. Focus group content was analysed using a content analysis approach to identify themes.
Findings Individualistic motivations included increased confidence and a chance to have a say. Collectivistic motivations included ‘helping through being part of something bigger’. Mobilisation (catalysing) issues included a desire for change, and ‘being asked’. In response to the questionnaire participants identified that they would have taken part regardless of any tangible benefits, with all saying that they would not have been put off by any of the costs.
Conclusion Participants in these focus groups were keen to be involved in dementia research and discounted any potential costs to themselves. They highlighted that being asked was an important factor in engaging them in dementia research.
Nursing Older People.
25, 9, 31-36.
doi: 10.7748/nop2013.11.25.9.31.e503
Correspondence
Emma.law@nhs.net
Conflict of interest
None of the authors has a conflict of interest to declare. This work was supported by the Scottish Dementia Clinical Research Network who received funding from Scottish ministers through the Chief Scientist Office. The views expressed are those of the authors and not necessarily those of Scottish ministers or the Chief Scientist Office
Peer review
This article has been subject to double blind peer review
Received: 26 June 2013
Accepted: 09 August 2013
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