Epistemic injustice in dementia and autism patient organizations - an empirical analysis.

Epistemic injustice in dementia and autism patient organizations - an empirical analysis. AJOB Empir Bioeth. 2017 Nov 08;:0 Authors: Jongsma K, Spaeth E, Schicktanz S Abstract Patient organizations (POs) represent patient collectives in health care policy. The inclusion of people with a 'neuro-psychiatric' condition poses a particular challenge for the organizational processes and political representation of such collectives. In recent years, new POs (POs of) have been established in the field of autism spectrum disorder and dementia that advocate a different agenda and have a different organizational structure than traditional POs (POs for). The divide between these two types of POs indicates a different standpoint with regard to who should be included on an organizational level, which voices are accepted and who should represent these voices on the political level. The inclusion and exclusion of voices needs to be normatively justified in order to be regarded legitimate representation of such a collective. With the help of Miranda Fricker's theory of epistemic injustice, we scrutinize whether and, if so, which types of epistemic injustices (wrongdoings to a person as a knower) can be found within POs' practices and the political field in which they operate, by analyzing 37 interviews with PO representatives, their members and policy makers. Our in-depth analysis indicates that persistent stereotypes hamper the inclusion of affected...
Source: AJOB Primary Research - Category: Medical Ethics Tags: AJOB Empir Bioeth Source Type: research