TY - JOUR
T1 - Outcomes valued by people living with dementia and their care partners
T2 - Protocol for a qualitative systematic review and synthesis
AU - Booi, Laura
AU - Wheatley, Alison
AU - Brunskill, Greta
AU - Banerjee, Sube
AU - Manthorpe, Jill
AU - Robinson, Louise
AU - Bamford, Claire
N1 - Funding Information:
Funding This work is supported by funding from Alzheimer’s Society Centre of Excellence grant number 331. The funder had no role in developing the protocol. This work is also supported by Research Capabilities Funding RES/0290/0247.
Funding Information:
Twitter Laura Booi @dementiahealth, Alison Wheatley @AlisonLWheatley and Greta Brunskill @GretaAnnB Acknowledgements Administrative support was provided by Angela Mattison. Specialist advice on developing the search strategy was provided by Fiona Beyer. We thank members of the PriDem DCC for their assistance and enthusiastic involvement throughout this project.
Funding Information:
from National Institute for Health Research Senior Investigator award (NF-SI-0616-10054), outside the submitted work.
Funding Information:
This work is supported by funding from Alzheimer's Society Centre of Excellence grant number 331. The funder had no role in developing the protocol. This work is also supported by Research Capabilities Funding RES/0290/0247.
Publisher Copyright:
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/8/19
Y1 - 2021/8/19
N2 - Introduction Growing numbers of interventions are being developed to support people and families living with dementia, but the extent to which they address the areas of most importance to the intended recipients is unclear. This qualitative review will synthesise outcomes identified as important from the perspectives of people living with dementia and their care partners, both for themselves and each other. Methods and analysis The review will employ thematic synthesis methodology. Studies from 1990 or later will be eligible if they include qualitative data on the views of people living with dementia or their care partners on valued outcomes or the lived experience of dementia. Databases to be searched include MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo and Social Sciences Premium Collection, in addition to systematically gathered grey literature. Rayyan QCRI software will be used to manage the screening processes, and NVivo software will be used to manage data extraction and analysis. The review will also critically evaluate the extent to which international recommendations address the areas of importance to people living with dementia and their families. The findings will be of relevance to researchers, policy makers and providers and commissioners of dementia services. The protocol is written in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols guidelines. Ethics and dissemination As the methodology of this study consists of collecting data from publicly available articles, it does not require ethical approval. We will share the results through conference presentations and an open-access publication in a peer-reviewed journal. Our mixed stakeholder involvement group will advise on dissemination to non-academic audiences. PROSPERO registration number CRD42020219274.
AB - Introduction Growing numbers of interventions are being developed to support people and families living with dementia, but the extent to which they address the areas of most importance to the intended recipients is unclear. This qualitative review will synthesise outcomes identified as important from the perspectives of people living with dementia and their care partners, both for themselves and each other. Methods and analysis The review will employ thematic synthesis methodology. Studies from 1990 or later will be eligible if they include qualitative data on the views of people living with dementia or their care partners on valued outcomes or the lived experience of dementia. Databases to be searched include MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycInfo and Social Sciences Premium Collection, in addition to systematically gathered grey literature. Rayyan QCRI software will be used to manage the screening processes, and NVivo software will be used to manage data extraction and analysis. The review will also critically evaluate the extent to which international recommendations address the areas of importance to people living with dementia and their families. The findings will be of relevance to researchers, policy makers and providers and commissioners of dementia services. The protocol is written in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols guidelines. Ethics and dissemination As the methodology of this study consists of collecting data from publicly available articles, it does not require ethical approval. We will share the results through conference presentations and an open-access publication in a peer-reviewed journal. Our mixed stakeholder involvement group will advise on dissemination to non-academic audiences. PROSPERO registration number CRD42020219274.
KW - dementia
KW - primary care
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85113760382&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2021-050909
DO - 10.1136/bmjopen-2021-050909
M3 - Review article
AN - SCOPUS:85113760382
SN - 2044-6055
VL - 11
JO - BMJ Open
JF - BMJ Open
IS - 8
M1 - e050909
ER -