Putting it into Practice

Title: Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study.
Author: Parveen S, Barker S, Kaur R, Kerry F, Mitchell W, Happs A, Fry G, Morrison V, Fortinsky R, Oyebode JR.
Date Published: 2018
Reference: Dementia,17(8):990-1000.
Are service users or carers authors: Yes

Abstract: This paper describes 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, in the Caregiving HOPE study. Patient and public involvement members were involved from the beginning and throughout the study design, conduct and dissemination. The level and nature of involvement was influenced by each individual's needs and desires, which changed over the course of the study. The involvement had a significant impact on recruitment and engagement at a national level, but was not without challenges, including the need for flexibility and additional financial and time costs.

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Categories: journal article
relevant to all service users
general principles of good practice
lessons from direct experience of involvement
involving seldom heard groups
staff in research organisations
General guidance on involving the public in research

Date Entered: 2019/01/09

Date Edited: 2019/01/09

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