Bates, Amanda, Ardouin, Kenny, McWilliams, Danielle (2024) Involving Experts by Experience in Craniofacial Research. The Cleft Palate Craniofacial Journal, . ISSN 1055-6656. E-ISSN 1545-1569. (doi:10.1177/10556656241283195) (KAR id:107308)
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Official URL: https://doi.org/10.1177/10556656241283195 |
Abstract
Many areas of health research increasingly involve end users of research (typically patients and their families/caregivers) in study design, management, and dissemination. Beyond recruiting patients as research participants, the shift is towards engaging patients, parents and caregivers as active partners on the research team, who are recognised and valued as ‘experts-by-experience’ (EbyE). Currently, involving EbyE is not routine in global craniofacial research. This paper highlights the value of EbyE involvement, addresses how to incorporate EbyE at all stages of research and discusses key considerations in facilitating positive experiences for EbyE.
Item Type: | Article |
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DOI/Identification number: | 10.1177/10556656241283195 |
Uncontrolled keywords: | cleft lip and palate, psychosocial adjustment, quality of life |
Subjects: | R Medicine |
Divisions: | Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies |
Funders: | University of Kent (https://ror.org/00xkeyj56) |
SWORD Depositor: | JISC Publications Router |
Depositing User: | JISC Publications Router |
Date Deposited: | 04 Oct 2024 10:39 UTC |
Last Modified: | 05 Nov 2024 13:13 UTC |
Resource URI: | https://kar.kent.ac.uk/id/eprint/107308 (The current URI for this page, for reference purposes) |
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