TY - JOUR
T1 - Active involvement in scientific research of persons living with dementia and long-term care users
T2 - a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement
AU - Groothuijse, Janneke M.
AU - van Tol, Lisa S.
AU - Leeuwen, C. C.M.(Toos) Hoeksel van
AU - van Delden, Johannes J.M.
AU - Caljouw, Monique A.A.
AU - Achterberg, Wilco P.
N1 - Publisher Copyright:
© The Author(s) 2024.
PY - 2024/4/9
Y1 - 2024/4/9
N2 - Background: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. Methods: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. Results: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. Conclusions: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership of the research process. Trial registration: Prospero 2021: CRD42021253736.
AB - Background: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. Methods: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. Results: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. Conclusions: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership of the research process. Trial registration: Prospero 2021: CRD42021253736.
KW - Dementia
KW - Involvement in research
KW - Long-term care
KW - Methods
KW - Older residents
KW - Review
UR - http://www.scopus.com/inward/record.url?scp=85189993471&partnerID=8YFLogxK
U2 - 10.1186/s12877-024-04877-7
DO - 10.1186/s12877-024-04877-7
M3 - Article
C2 - 38594644
AN - SCOPUS:85189993471
SN - 1471-2318
VL - 24
JO - BMC Geriatrics
JF - BMC Geriatrics
IS - 1
M1 - 324
ER -