BMJ Open (Sep 2023)

Using co-creation focus groups to customise a remote multidomain programme designed to increase dementia literacy

  • ,
  • Aravind Ganesh,
  • Teresa Liu-Ambrose,
  • Natalie Phillips,
  • Kenneth Rockwood,
  • Edeltraut Kröger,
  • Nathan Herrmann,
  • Guangyong Zou,
  • Paul Mick,
  • Serge Gauthier,
  • Walter Wittich,
  • Marie-Céline Lorenzini,
  • Danielle Laurin,
  • Gillian Einstein,
  • Jennifer Bethell,
  • Eric Smith,
  • Karen Messer,
  • Caroline Duchaine,
  • Andrew Hamilton,
  • Heather Keller,
  • Barry Greenberg,
  • Lesley Miller,
  • Susan Marzolini,
  • Robin Hsiung,
  • Jennifer Campos,
  • Jennifer Walker,
  • Catherine Hughes,
  • Nicole Gervais,
  • Andrew Centen,
  • Louis Bherer,
  • Brigitte Gilbert,
  • Amanda Wagner,
  • Katherine Siminovitch,
  • Laura Middleton,
  • Carol Thomas,
  • Andrew Lim,
  • Nicole Anderson,
  • Quincy Almeida,
  • Ron Postuma,
  • Nadia Gosselin,
  • Howard Feldman,
  • Alan Evans,
  • Howard Chertkow,
  • Nellie Kamkar,
  • Manuel Montero-Odasso,
  • Mark Speechley,
  • Bill McIlroy,
  • Richard Camicioli,
  • Roger Marple,
  • Raed Joundi,
  • Chris McGibbon,
  • Linda Yetman,
  • Bryn Robinson,
  • Sylvie Belleville,
  • Haakon Nygaard,
  • Danielle Alcock,
  • Sarah Banks,
  • Paul Brewster,
  • Senny Chan,
  • Marc Cuesta,
  • Samir Das,
  • Carol Evans,
  • Guylaine Ferland,
  • Scott Hofer,
  • Inbal Itzhak,
  • Diane Jacobs,
  • Jody-Lynn Lupo,
  • Zia Mohades,
  • Carolyn Revta,
  • Julie Robillard,
  • Penny Slack,
  • Kayla Regan,
  • Gabrielle Aubin,
  • Asma Fadhlaoui,
  • Nicole D Anderson,
  • Nouha Ben Gaied,
  • Joyla Furlano,
  • Pamela Jarrett,
  • Michael Borrie,
  • January Durant,
  • Tatiana Herold,
  • Yanina Sarquis-Adamson,
  • Penelope Slack,
  • Amal Trigui,
  • Shahnaz Winer,
  • Fatim Ajwani,
  • Anas Alrohimi,
  • Gabrielle Aubin Geneviève Arsenault-Lapierre,
  • Maude Bouchard,
  • Mark Boulos,
  • Jacqueline Burt,
  • Asif Javed Butt,
  • Julie Carrier,
  • Alison Chasteen,
  • Rachel A. Crockett,
  • Danielle D’Amico,
  • Véronique Daneault,
  • Thanh Dang-Vu,
  • Alex Desautels,
  • Caroline Desrosiers,
  • Shirley Dumassais,
  • Emily Dwosh,
  • Margaret Fahnestok,
  • Ryan Stanley Falck,
  • Alexandra Fiocco,
  • Christine Gagnon,
  • Jean-François Gagnon,
  • Liisa Galea,
  • Catherine-Alexandra Grégoire,
  • Stephanie Huang,
  • Inbal Itzak,
  • Elizaveta Klekovkina,
  • Kim Lasnier-Le Quang,
  • Dominique Lorrain,
  • Kaljani Mahalingam,
  • Sarantia Samantha Maltezos,
  • Brooklyn Mankasingh,
  • Samira Mehrabi,
  • Tatiyana Mollayeva,
  • Annabelle Moore,
  • Aline Moussard,
  • Reanne Mundadan,
  • Kelly Murphy,
  • Leigh-Anne M. Noltie,
  • JB Orange,
  • Emilie Parolin,
  • Kathy Pichora-Fuller,
  • Lori Piquette,
  • Jason Plaks,
  • Avery Pratt,
  • Maria Natasha Rajah,
  • Helli Raptis,
  • Anne Julien-Rocheleau,
  • Marie Y. Savundranayagam,
  • Kylie Sullivan,
  • Munira Sultana,
  • Fatima Tangkhpanya,
  • Talar Tcherkezian,
  • Anne-Julie Tessier,
  • Lynn Valeyry Verty,
  • Stephanie Yamin,
  • Anthonio Zadra,
  • Rolando Acosta,
  • Camille Beaudoin,
  • Charlie Henri-Bellamare,
  • Jessica Callegaro,
  • Milad Heshmati,
  • Pierre Pac Soo,
  • Krista Lanctot,
  • Joanne McLaurin,
  • Paul Territo,
  • Donald Weaver,
  • Cheryl Wellington,
  • Rida Abou-Haidar,
  • Sarah Best,
  • Korbin Blue,
  • Isabella Celotto,
  • Lauren Cole,
  • Roger Dixon,
  • Hiroko Dodge,
  • Nada Elhayek,
  • Thalia Field,
  • Jason Haassenstab,
  • Josée Hachee,
  • Lisa Madlesnky,
  • Lauren Moniz,
  • Hanin Omar,
  • Chris Pauley,
  • Jenna Sands Ève Samson,
  • Andrew Sexton,
  • Sheetal Shajan,
  • Sachie Sharma,
  • Mariam Sidrak,
  • Julia Truemner,
  • François Boutin,
  • Yves Boutot,
  • Lise Daigle,
  • Nita Goldband,
  • Elaine Harris,
  • Janet Finkelstein,
  • Kateri Marchand,
  • Lloyd Schneider

DOI
https://doi.org/10.1136/bmjopen-2023-074555
Journal volume & issue
Vol. 13, no. 9

Abstract

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Objectives To adapt the content and functionalities of Brain Health PRO, a web-based multidomain program designed to increase dementia literacy, to the context and needs of users, providers and community organisations across Québec, Canada.Design Five consecutive qualitative co-creation focus group sessions 30–90 min in duration each, exploring potential barriers and facilitators to usability, accessibility, comprehensibility, participant recruitment and retention.Setting Virtual meetings.Participants A 15-member team based in Québec and Ontario, Canada, consisting of 9 researchers (including a graduate student and the project coordinator), representing occupational therapy, sensory rehabilitation, neuropsychology, psychology, health science and research methods, 3 informal caregivers of older adults living with cognitive decline and 3 members of the Federation of Quebec Alzheimer Societies.Data analysis Session recordings were summarised through both qualitative description and thematic analysis.Results The synthesised recommendations included adjustments around diversity, the complexity and presentation styles of the materials, suggestions on refining the web interface and the measurement approaches; it influenced aspects of participant recruitment, retention efforts and engagement with the content of Brain Health PRO.Conclusions Co-creation in dementia prevention research is important because it involves collaboration between researchers, community support and service providers, and persons with lived experience as care providers, in the design and implementation of clinical studies. This approach helps to ensure that the content and presentation of educational material is relevant and meaningful to the target population and those involved in its delivery, and it leads to a greater understanding of their needs and perspectives.