TY - JOUR
T1 - The Balanced Participation Model
T2 - Sharing opportunities for giving people with early-stage dementia a voice in research
AU - Thoft, Diana Schack
AU - Pyer, Michelle
AU - Horsbøl, Anders
AU - Parkes, Jacqueline
PY - 2020
Y1 - 2020
N2 - 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.
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.
KW - dementia
KW - involvement
KW - participation
KW - participatory research model
KW - research
UR - http://www.scopus.com/inward/record.url?scp=85059333174&partnerID=8YFLogxK
U2 - 10.1177/1471301218820208
DO - 10.1177/1471301218820208
M3 - Journal article
AN - SCOPUS:85059333174
SN - 1471-3012
VL - 19
SP - 2294
EP - 2313
JO - Dementia
JF - Dementia
IS - 7
ER -