Illness representations, knowledge and motivation to perform presymptomatic testing for late-onset genetic diseases

Leite, Ângela; Dinis, Maria Alzira Pimenta; Sequeiros, Jorge; Paúl, Constança

http://hdl.handle.net/10284/7902

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Authors

Leite, Ângela

Dinis, Maria Alzira Pimenta

Sequeiros, Jorge

Paúl, Constança

Abstract(s)

This study addresses the relation between illness representations, knowledge and motivation to perform the presymptomatic testing (PST) of subjects at-risk for Familial Amyloydotic Polyneuropathy (FAP), Huntington's disease (HD) and Machado-Joseph disease (MJD), compared with subjects at-risk for Hereditary Hemochromatosis (HH). The sample comprised a clinical group of 213 subjects at genetic risk for FAP, HD and MJD, and a comparison group of 31 subjects at genetic risk for HH, that answered three open-ended questions relating illness representations, knowledge about the disease, and motivation to perform PST. People at-risk for FAP, HD and MJD use more metaphors, make more references to the family, are more concerned with the future and feel more out of curiosity and to learn, than for HH. These subjects at-risk correspond to the profile of somatic individual or personhood, wherein the unsubjectivation of the disease can function as a coping mechanism.

Description

http://sherpa.ac.uk/romeo/issn/1354-8506/

Keywords

Adolescent Adult Female Humans Huntington Disease Interviews as Topic Late Onset Disorders Machado-Joseph Disease Male Risk Factors Young Adult Genetic Testing Motivation

URI

http://hdl.handle.net/10284/7902

Citation

APA: Leite, Â., Dinis, M. A. P., Sequeiros, J., & Paúl, C. (2017). Illness representations, knowledge and motivation to perform presymptomatic testing for late-onset genetic diseases. Psychology Health & Medicine, 22(2), 244-249. doi:10.1080/13548506.2016.1159704