학술논문

Using co-creation focus groups to customise a remote multidomain programme designed to increase dementia literacy
Document Type
article
Author
Aravind GaneshTeresa Liu-AmbroseNatalie PhillipsKenneth RockwoodEdeltraut KrögerNathan HerrmannGuangyong ZouPaul MickSerge GauthierWalter WittichMarie-Céline LorenziniDanielle LaurinGillian EinsteinJennifer BethellEric SmithKaren MesserCaroline DuchaineAndrew HamiltonHeather KellerBarry GreenbergLesley MillerSusan MarzoliniRobin HsiungJennifer CamposJennifer WalkerCatherine HughesNicole GervaisAndrew CentenLouis BhererBrigitte GilbertAmanda WagnerKatherine SiminovitchLaura MiddletonCarol ThomasAndrew LimNicole AndersonQuincy AlmeidaRon PostumaNadia GosselinHoward FeldmanAlan EvansHoward ChertkowNellie KamkarManuel Montero-OdassoMark SpeechleyBill McIlroyRichard CamicioliRoger MarpleRaed JoundiChris McGibbonLinda YetmanBryn RobinsonSylvie BellevilleHaakon NygaardDanielle AlcockSarah BanksPaul BrewsterSenny ChanMarc CuestaSamir DasCarol EvansGuylaine FerlandScott HoferInbal ItzhakDiane JacobsJody-Lynn LupoZia MohadesCarolyn RevtaJulie RobillardPenny SlackKayla ReganGabrielle AubinAsma FadhlaouiNicole D AndersonNouha Ben GaiedJoyla FurlanoPamela JarrettMichael BorrieJanuary DurantTatiana HeroldYanina Sarquis-AdamsonPenelope SlackAmal TriguiShahnaz WinerFatim AjwaniAnas AlrohimiGabrielle Aubin Geneviève Arsenault-LapierreMaude BouchardMark BoulosJacqueline BurtAsif Javed ButtJulie CarrierAlison ChasteenRachel A. CrockettDanielle D’AmicoVéronique DaneaultThanh Dang-VuAlex DesautelsCaroline DesrosiersShirley DumassaisEmily DwoshMargaret FahnestokRyan Stanley FalckAlexandra FioccoChristine GagnonJean-François GagnonLiisa GaleaCatherine-Alexandra GrégoireStephanie HuangInbal ItzakElizaveta KlekovkinaKim Lasnier-Le QuangDominique LorrainKaljani MahalingamSarantia Samantha MaltezosBrooklyn MankasinghSamira MehrabiTatiyana MollayevaAnnabelle MooreAline MoussardReanne MundadanKelly MurphyLeigh-Anne M. NoltieJB OrangeEmilie ParolinKathy Pichora-FullerLori PiquetteJason PlaksAvery PrattMaria Natasha RajahHelli RaptisAnne Julien-RocheleauMarie Y. SavundranayagamKylie SullivanMunira SultanaFatima TangkhpanyaTalar TcherkezianAnne-Julie TessierLynn Valeyry VertyStephanie YaminAnthonio ZadraRolando AcostaCamille BeaudoinCharlie Henri-BellamareJessica CallegaroMilad HeshmatiPierre Pac SooKrista LanctotJoanne McLaurinPaul TerritoDonald WeaverCheryl WellingtonRida Abou-HaidarSarah BestKorbin BlueIsabella CelottoLauren ColeRoger DixonHiroko DodgeNada ElhayekThalia FieldJason HaassenstabJosée HacheeLisa MadlesnkyLauren MonizHanin OmarChris PauleyJenna Sands Ève SamsonAndrew SextonSheetal ShajanSachie SharmaMariam SidrakJulia TruemnerFrançois BoutinYves BoutotLise DaigleNita GoldbandElaine HarrisJanet FinkelsteinKateri MarchandLloyd Schneider
Source
BMJ Open, Vol 13, Iss 9 (2023)
Subject
Medicine
Language
English
ISSN
2023-0745
2044-6055
Abstract
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.