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Neurology
Original research
Impact of involving people with dementia and their care partners in research: a qualitative study
  1. Jahanara Miah1,2,
  2. Suzanne Parsons2,
  3. Karina Lovell3,
  4. Bella Starling2,
  5. Iracema Leroi4,1,
  6. Piers Dawes5,6
  1. 1Division of Neuroscience and Experimental Psychology, University of Manchester, Manchester, UK
  2. 2Public Programmes Team, Manchester University NHS Foundation Trust, Manchester, UK
  3. 3The School of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, UK
  4. 4School of Medicine, Global Brain Health Institute, Dublin, Ireland
  5. 5Manchester Centre for Audiology and Deafness (ManCAD), University of Manchester, Manchester, UK
  6. 6Department of Linguistics, Australian Hearing Hub, Macquarie University, Sydney, New South Wales, Australia
  1. Correspondence to Dr Piers Dawes; piers.dawes{at}mq.edu.au

Abstract

Objectives We aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.

Design We used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.

Setting We evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.

Participants We purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.

Results Impact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.

Conclusions PPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

  • qualitative research
  • dementia
  • public health
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/bmjopen-2020-039321

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    Footnotes

    • Contributors IL, PD, KL, BS contributed to the conception of the study. JM, PD and SP contributed to the design of the study. JM wrote the first draft and was involved in the editing of the manuscript, which was critically reviewed by IL, KL, PD and SP and approved the final manuscript.

    • Funding This protocol paper is part of Work Package 5 of the SENSE-Cog project, which has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No. 668648. Piers Dawes, Suzanne Parsons and Bella Starling are supported by the National Institute for Health Research Manchester Biomedical Research Centre.

    • Disclaimer The funding body has no part in study design, data collection, data analysis, data interpretation or manuscript writing.

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Ethics approval Ethical Approval was approved by the University of Manchester’s Research Ethics Committee UREC: 2017-0627-2142. Additional ethical approvals were sought and obtained for each study site; in Nicosia approved by the Cyprus National Bioethics Committee, in Nice by ‘Comité de Protection des personnes Sud Est I’, and in Athens by Ethical Committee of Health Sciences and Scientific Committee of the Eginition Hospital of the National and Kapodistrian University of Athens.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Interview data from this study are personally identifiable for RUG members and researchers, and are therefore not available for data sharing.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.