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Background

  1. Top of page
  2. Background
  3. Method
  4. Results
  5. Discussion
  6. Conflict of interest
  7. References

Dementia is a major public health concern and is currently one of the main priorities of the major research funding bodies, as emphasised by the Prime Minister's Challenge on Dementia (Department of Health, 2012) to enrol one in 10 people with dementia (PWD) in clinical studies. In Scotland, currently less than 1% of PWD are involved in research activity.

Law et al. (2011) described research topics seen as priorities by PWD and carers. Some work has been carried out on what research topics PWD and carers would like to participate, but there is little research investigating what factors motivate, improve or prevent PWD (e.g. Grill and Karlawish, 2010), or carers (e.g. Mastwyk et al. 2003) from participating. We adapted a tested theoretical model—the Participation Chain (Simmons and Birchall, 2005)—and examined motivation using a focus group methodology.

Method

  1. Top of page
  2. Background
  3. Method
  4. Results
  5. Discussion
  6. Conflict of interest
  7. References

Four focus groups, each lasting 60–90 min and facilitated by two Scottish Dementia Clinical Research Network staff, were undertaken within different health board areas of Scotland. Participants were chosen from the Scottish Dementia Research Interest Register comprising PWD and carers who had agreed to be contacted about dementia research projects. Discussion centred on why people agreed to participate in the focus groups and their expectations from participation. Transcripts of the focus groups were analysed using a content analysis approach to identify themes. Text was coded for themes that generated a coding schedule and coding manual.

Results

  1. Top of page
  2. Background
  3. Method
  4. Results
  5. Discussion
  6. Conflict of interest
  7. References

‘So I say when this focus group was mentioned I thought “och in for a penny, in for a pound”.’

Themes emerging to explain motivation could be grouped into ‘individualistic’—increased self-confidence, a sense of achievement, a chance to have my say, feeling more in control, a valuable learning experience; ‘collectivistic’—a sense of community, shared values, shared goals; ‘mobilisation’—a negative relationship with services, a desire for change, a sense of deprivation, being asked; and ‘resources’. Table 1 illustrates typical responses from one group. No one felt they would not benefit from participation.

Table 1. Benefits and costs of participation in dementia research
Benefits of participation% (N)
Valuable learning experience88 (7)
Enjoyment38 (3)
Giving me a social life13 (1)
A chance to have my say38 (3)
Making me more self-confident38 (3)
Getting a sense of personal achievement25 (2)
None of these benefits0 (0)
Costs of participation% (N)
The effort of gaining new skills and knowledge13 (1)
Having to meet and get on with new people25 (2)
Being bored or uncomfortable in meetings13 (1)
Financial costs13 (1)
Being unpopular with people not belonging to the group0 (0)
Seeing other people getting the benefits without doing the work13 (1)
None of these costs50 (4)

The response to the question ‘if there were something else you could be doing and would this put you off participating?’ yielded a unanimous ‘no’. This was reflected by the focus group respondents who replied that ‘being asked’ was an important factor in their decision to participate in the focus group.

Discussion

  1. Top of page
  2. Background
  3. Method
  4. Results
  5. Discussion
  6. Conflict of interest
  7. References

Participants in these focus groups were supportive of dementia research. A strong motivating factor was anger at the sense of deprivation people felt and the lack of research opportunities available because of there being limited drug treatment opportunities in this area of research. However, ‘being asked’ was unanimously agreed as the best motivator to participate. There was a general feeling that the results of research were not clearly communicated back to participants, influencing future participation.

There are commonalities with the literature specific to pharmacological studies (e.g. Grill and Karlawish, 2010), both in the positive and negative features of what engaged people to our research findings, even though we are dealing more with the fundamental principles of engagement in research for PWD and their carers. We have shown that by applying the theory-based approach of the participation chain, we can increase our understanding of what motivates people to participate (detailed manuscript submitted for publication). This model could be applied to inform future dementia research planning and requires further investigation in a larger scale project.

Key points

  • Understanding motivations to participate in research will improve recruitment and retention to dementia studies.
  • ‘Being asked’ is identified as a major motivator to participate; therefore, if we can learn which people to target, this will improve recruitment.
  • In planning dementia research, an understanding of what might stop people from participating will help researchers to design studies in which people will want to participate.

References

  1. Top of page
  2. Background
  3. Method
  4. Results
  5. Discussion
  6. Conflict of interest
  7. References
  • Department of Health. 2012. Prime Minister's Challenge on Dementia – Delivering Major Improvements in Dementia Care and Research by 2015. Department of Health: London.
  • Grill J., Karlawish J. 2010. Addressing the challenges to successful recruitment and retention in Alzheimer's disease clinical trials. Alzheimer's Research & Therapy 2(6): 34.111.
  • Law E., Starr J.M., Connelly P. 2011. Dementia research—what do different public groups want? A survey by the Scottish Dementia Clinical Research Network. Dementia 12: 2328.
  • Mastwyk M., Macfarlane S., LoGiudice D., Sullivan K.A. 2003. Why participate in an Alzheimer's disease clinical trial? Is it of benefit to carers and patients? International Psychogeriatrics 15: 149156.
  • Simmons R., Birchall J. 2005. A joined-up approach to User participation in public services: strengthening the “participation chain”. Social Policy and Administration 39: 260283.