Literature DB >> 24171623

What motivates patients and carers to participate in dementia studies?

Emma Law1, Tom C Russ, Peter J Connelly.   

Abstract

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.

Entities:  

Mesh:

Year:  2013        PMID: 24171623     DOI: 10.7748/nop2013.11.25.9.31.e503

Source DB:  PubMed          Journal:  Nurs Older People        ISSN: 1472-0795


  5 in total

1.  Community perceptions related to brain donation: Evidence for intervention.

Authors:  Catherine W Striley; Sadaf A Milani; Evan Kwiatkowski; Steven T DeKosky; Linda B Cottler
Journal:  Alzheimers Dement       Date:  2018-10-23       Impact factor: 21.566

2.  Learning from older peoples' reasons for participating in demanding, intensive epidemiological studies: a qualitative study.

Authors:  Alicja M Baczynska; Sarah C Shaw; Harnish P Patel; Avan A Sayer; Helen C Roberts
Journal:  BMC Med Res Methodol       Date:  2017-12-12       Impact factor: 4.615

3.  It takes two to tango: carers' reflections on their participation and the participation of people with dementia in the James Lind Alliance process.

Authors:  Agnete Nygaard; Liv Halvorsrud; Asta Bye; Astrid Bergland
Journal:  BMC Geriatr       Date:  2020-05-14       Impact factor: 3.921

4.  Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

Authors:  Joanne Ashcroft; Til Wykes; Joseph Taylor; Adam Crowther; George Szmukler
Journal:  J Ment Health       Date:  2016-01-06

5.  A co-designed framework to support and sustain patient and family engagement in health-care decision making.

Authors:  Tamara L McCarron; Thomas Noseworthy; Karen Moffat; Gloria Wilkinson; Sandra Zelinsky; Deborah White; Derek Hassay; Diane L Lorenzetti; Nancy J Marlett
Journal:  Health Expect       Date:  2020-04-27       Impact factor: 3.377

  5 in total

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