Exploring the impact of long qt syndrome : perspectives from a northern British Columbia First Nations community ...

There is a disproportionately high rate of hereditary Long QT Syndrome (LQTS) in Northern British Columbia First Nations people, partly due to a novel missense mutation in KCNQ1 (V205M). The effect has been previously described (Arbour et al, 2008) predisposing those affected to syncope, arrhythmia...

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Bibliographic Details
Main Author: Huisman, Lee-Anna Jennifer
Format: Article in Journal/Newspaper
Language:English
Published: University of British Columbia 2010
Subjects:
Online Access:https://dx.doi.org/10.14288/1.0071033
https://doi.library.ubc.ca/10.14288/1.0071033
Description
Summary:There is a disproportionately high rate of hereditary Long QT Syndrome (LQTS) in Northern British Columbia First Nations people, partly due to a novel missense mutation in KCNQ1 (V205M). The effect has been previously described (Arbour et al, 2008) predisposing those affected to syncope, arrhythmia and sudden death. A community based participatory research approach has enabled over 250 community members to take part, identifying more than 40 carriers of the mutation. Although a great deal of previous research has been carried out on the biological aspects of LQTS, there has been little study into the impact of living with a mutation that predisposes one to sudden death, and no previous studies have provided cultural insights into the issues a remote First Nations community might face. The goal of this thesis was to explore what facilitates and hinders resiliency and coping for those living with LQTS. Participants were invited to partake in their choice of one to one interviews, Photovoice, and Talking ...