The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research

Diana Schack Thoft*, Michelle Pyer, Anders Horsbol, Jacqueline Parkes

*Corresponding author for this work

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.
Original languageEnglish
Pages (from-to)0-20
Number of pages20
JournalDementia
DOIs
Publication statusPublished - 26 Dec 2018

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dementia
research project
participation
Group
stigmatization
research process
group membership
Denmark
qualitative research
experience
discrimination
planning
evaluation
school

Cite this

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title = "The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research",
abstract = "Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.",
author = "{Schack Thoft}, Diana and Michelle Pyer and Anders Horsbol and Jacqueline Parkes",
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The Balanced Participation Model: Sharing opportunities for giving people with early-stage dementia a voice in research. / Schack Thoft, Diana; Pyer, Michelle; Horsbol, Anders; Parkes, Jacqueline.

In: Dementia, 26.12.2018, p. 0-20.

Research output: Contribution to journalArticleResearchpeer-review

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AB - Much has been written about the stigmatisation and discrimination ascribed to people with dementia in society and in research. This marginalisation has led to a silencing of their voices and their experiences both on a national and international scale, and an often limited understanding about how people with dementia experience daily life. In this study, a participatory research project was conducted in collaboration with people with early-stage dementia who attended an adult school in Denmark. The study explored how to work collaboratively with people with dementia to develop their own research projects. Based on the findings, a qualitative participatory research model has been designed to support the active engagement of people with early-stage dementia in research. The project involved 12 people with early-stage dementia, who were divided into two groups (n = 6 in each group) and then trained in research skills. Each group was then supported to design, develop and undertake a group research project. This was one continuous process, and constantly took account of the individual competencies of each group member. Based upon the knowledge gained from the training in research skills and the participatory research project The Balanced Participation Model was developed. The model illustrates five phases in a participatory research process focusing on the considerations needed for participant recruitment, planning, training in research skills, the participatory research project, and the evaluation and dissemination of results. The core of the model highlights the importance of the researcher role in facilitating the collaboration.

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