People Living With Dementia and Their Families as Educators for Social Justice.

Background: It is increasingly recognised that dementia education and training should include the direct voices of Experts by Experience (people living with dementia and their families). Good practice in facilitating teaching roles for people living with dementia needs to be identified to maximise i...

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Publicado en:Health Expectations Vol. 28; no. 2; pp. 1 - 9
Autores principales: Mason, Clare, Barbosa, Ana, Jones, Danielle, Andrews, Michael, Capstick, Andrea
Formato: research Journal Article
Publicado: Wiley-Blackwell Apr2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Apr2025
      vid: 28
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      pub: Wiley-Blackwell
      place: Malden, Massachusetts
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        atl: People Living With Dementia and Their Families as Educators for Social Justice.
      aug:
        au:
          Mason, Clare
          Barbosa, Ana
          Jones, Danielle
          Andrews, Michael
          Capstick, Andrea
        affil: Centre for Applied Dementia Studies, University of Bradford, Bradford, UK
      sug:
        subj:
          Dementia Education
          Curriculum Development
          Dementia Patients Psychosocial Factors
          Caregivers Psychosocial Factors
          Family Psychosocial Factors
          Social Justice Education
          Family Role
          Human
          United Kingdom
          Videorecording
          Motion Pictures
          Course Content
          Thematic Analysis
          Dementia Diagnosis
          Dementia Therapy
          Patient Centered Care
          Communication
          Support, Psychosocial
          After Care
      ab: Background: It is increasingly recognised that dementia education and training should include the direct voices of Experts by Experience (people living with dementia and their families). Good practice in facilitating teaching roles for people living with dementia needs to be identified to maximise inclusion and promote social justice. Objective: This study aims to discuss the co‐creation of a suite of learning modules on dementia, whose predetermined content was consistent with the three tiers of the UK Dementia Training Standards (DTS), which include filmed interviews with people living with dementia and family members. Design: Experts by Experience advised on content and took part in filmed interviews contributing to the development of 14 interactive learning modules based on the DTS curriculum. The process was evaluated using (1) participant and facilitator reflection on the film‐making process and (2) independent researcher analysis of the films' content. Results: Seven people living with dementia and 10 family members took part. Four key points are identified regarding good practice in the co‐creation of film‐based learning materials with people living with dementia and their families. Five key themes are identified from the films' content, highlighting Experts by Experience spontaneous reference to experiences of perceived injustice related to their diagnosis, independently of the intended content of the module. Conclusion: The active involvement of people living with dementia and their families in practitioner and professional education requires us to pay close attention to what they say. Learning materials should be Expert by Experience‐led rather than curriculum‐led. Patient or Public Contribution: People living with dementia and their families were involved in the design, conduct and evaluation of the study and in the preparation of the manuscript.
      pubtype: Academic Journal
      doctype:
        research
        Journal Article
      ougenre: Article
    language: English
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