Co-producing a shared understanding and definition of empowerment with people with dementia.
Co-production
Dementia
Empowerment
Narrative summary
Participation and empowerment
Scoping review
Journal
Research involvement and engagement
ISSN: 2056-7529
Titre abrégé: Res Involv Engagem
Pays: England
ID NLM: 101708164
Informations de publication
Date de publication:
2019
2019
Historique:
received:
11
11
2018
accepted:
24
05
2019
entrez:
18
6
2019
pubmed:
18
6
2019
medline:
18
6
2019
Statut:
epublish
Résumé
Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement. We use a unique approach toward a definition of empowerment for PWD. Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as 'A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources'. The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.
Sections du résumé
BACKGROUND
BACKGROUND
Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement.
METHODS
METHODS
We use a unique approach toward a definition of empowerment for PWD.
RESULTS
RESULTS
Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as 'A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources'.
CONCLUSIONS
CONCLUSIONS
The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.
Identifiants
pubmed: 31205750
doi: 10.1186/s40900-019-0154-2
pii: 154
pmc: PMC6558688
doi:
Types de publication
Journal Article
Langues
eng
Pagination
19Subventions
Organisme : Medical Research Council
ID : MR/K023241/1
Pays : United Kingdom
Déclaration de conflit d'intérêts
Competing interestsThe authors declare that there is no competing interests.
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