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Experiences of participant and public involvement in an international randomized controlled trial for people living with dementia and their informal caregivers

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posted on 2024-05-16, 08:53 authored by Jodie BloskaJodie Bloska, Sarah Crabtree, Nina Wollersberger, Oti Mitchell, Jenny Coles, Caroline Halsey, Geraldine Parry, Robert Stewart, Susan Thacker, Mark Thacker, Leica Claydon-MuellerLeica Claydon-Mueller, Yvette Winnard, Kate McMahon, Carina Petrowitz, Agnieszka Smrokowska-Reichmann, Beatrix van Doorn, FELICITY BAKERFELICITY BAKER, Laura Blauth, Anna Bukowska, Karette Stensæth, JEANETTE TAMPLINJEANETTE TAMPLIN, Thomas Wosch, Helen Odell-MillerHelen Odell-Miller

Background

This study was initiated and co-designed by a Participant and Public Involvement (PPI) group attached to HOMESIDE, a randomized controlled trial that investigated music and reading interventions for people living with dementia and their family caregivers across five countries: Australia, Germany, Norway, Poland, and the UK. The aim was to capture experiences of PPI across the five countries, explore the benefits and challenges of PPI in dementia research, and identify contributions made to the study.

Methods

We surveyed PPI members and academic researchers who collaborated on the HOMESIDE study. The survey was co-designed through consultation with PPI members and academics, alongside a small scoping literature review. Survey questions covered four topics: (1) expectations for PPI, (2) perceived contributions of PPI to the research study, (3) benefits and challenges of PPI, and (4) recommendations for future PPI in dementia research.

Results

There were 23 responses, representing 50% of the PPI members (n = 16) and 29% of academics (n = 7). PPI was found to be beneficial to the research and individuals involved. Contributions to the research included supporting recruitment and publicity, advising on the design of participant-facing materials, guiding the design and delivery of the interventions, and identifying cultural differences affecting research delivery. PPI members benefited from building connections, sharing experiences and receiving support, learning about dementia and research, and gaining new unexpected experiences. Academics learned about the realities of living with dementia, which they felt informed and grounded their work. Several challenges were identified, including the need for clear expectations and objectives, inconsistency of PPI members across research stages, limitations of meeting online versus in-person, scheduling difficulties, and language barriers.

Conclusions

This study identifies important considerations for implementing PPI within dementia studies and international healthcare research more broadly. Our findings guided the development of five recommendations: (1) involve PPI members as early as possible and throughout the research process; (2) create a space for constructive criticism and feedback; (3) have clear tasks, roles, and expectations for PPI members; (4) involve PPI members with a diverse range of experiences and backgrounds; and (5) embed infrastructure and planning to support PPI.

Funding

EU Joint Programme – Neurodegenerative Disease Research (JPND), which included joint funding from the National Health and Medical Research Council, Australia (APP1169867); The Research Council of Norway (project no. 298995); Federal Ministry of Education and Research, Germany (01ED1901); The National Centre for Research and Development, Poland (JPND/04/2019); and Alzheimer’s Society, UK (grant no. 462); QR funding from Anglia Ruskin University's Health Performance and Wellbeing stream.

History

Refereed

  • Yes

Volume

10

Publisher

Springer Nature

File version

  • Published version

Legacy Faculty/School/Department

Faculty of Arts, Humanities, Education & Social Sciences