Show simple item record

dc.contributor.authorParveen, Sahdia*
dc.contributor.authorBarker, S.*
dc.contributor.authorKaur, R.*
dc.contributor.authorKerry, F.*
dc.contributor.authorMitchell, W.*
dc.contributor.authorHapps, A.*
dc.contributor.authorFry, Gary*
dc.contributor.authorMorrison, V.*
dc.contributor.authorFortinsky, R.*
dc.contributor.authorOyebode, Jan*
dc.date.accessioned2019-02-28T12:44:57Z
dc.date.available2019-02-28T12:44:57Z
dc.date.issued2018-11
dc.identifier.citationParveen S, Barker S, Kaur R et al (2018) Involving minority ethnic communities and diverse experts by experience in dementia research: the Caregiving HOPE study. Dementia. 17(8): 990-1000.en_US
dc.identifier.urihttp://hdl.handle.net/10454/16863
dc.descriptionYesen_US
dc.description.abstractPatient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study’s research processes and outcomes. Patient and public involvement members were considered experts by experience and involved with study conception, design, conduct and dissemination. The perspective of the experts by experience is also presented in this article. The level and nature of involvement was influenced by each individual’s needs and desires which changed over the course of the study. The approach had a significant impact on study outcomes as evidenced by successful recruitment and engagement at a national level, but was not without challenges with greater flexibility required and fuller consideration of financial and time costs required. Benefits of the approach included strong engagement, improved outcomes (successful recruitment of seldom heard groups) and meaningful relationships between researchers and experts by experience. A person-centred and culturally sensitive approach is required with patient and public involvement to ensure involvement is not detrimental to those involved, is meaningful and enjoyable and has a positive impact on the research.en_US
dc.description.sponsorshipAlzheimer’s Society under grant 237 (AS-JF-14-005).en_US
dc.language.isoenen_US
dc.relation.isreferencedbyhttps://doi.org/10.1177/1471301218789558en_US
dc.rights(c) The Author(s) 2018. Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1471301218789558 journals.sagepub.com/home/demen_US
dc.subjectPatient and public involvementen_US
dc.subjectCaregiversen_US
dc.subjectDementiaen_US
dc.subjectBAMEen_US
dc.subjectSouth Asianen_US
dc.subjectMinority ethnicen_US
dc.titleInvolving minority ethnic communities and diverse experts by experience in dementia research: the Caregiving HOPE studyen_US
dc.status.refereedYesen_US
dc.date.Accepted2018
dc.date.application2018-10-29
dc.typeArticleen_US
dc.type.versionAccepted manuscripten_US
refterms.dateFOA2019-02-28T12:44:57Z


Item file(s)

Thumbnail
Name:
Parveen_et_al_Dementia.pdf
Size:
544.8Kb
Format:
PDF

This item appears in the following Collection(s)

Show simple item record