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UBC Theses and Dissertations

Exploring the impact of long qt syndrome : perspectives from a northern British Columbia First Nations community Huisman, Lee-Anna Jennifer


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 Circles. Interviews were recorded, transcribed, and analyzed qualitatively using the Systematic Text Condensation method. Twelve women shared their personal experiences of living with LQTS; eight participated in individual interviews, two participated in the Talking Circle, and two participated in both. Six of the women had known mutations, one was mutation negative, and five were awaiting genetic results. Most had affected children. In general, learning about a LQTS diagnosis was perceived as traumatic, with gradual acceptance that lead to coping. The main factors that facilitate resiliency and coping were positive family relationships, spiritual faith, and knowledge about LQTS. The main factors that hinder resiliency and copying were a poor understanding of the biological or clinical aspects LQTS, conflicting medical advice, especially about necessary physical restrictions, and LQTS not being taken seriously by both social contacts and health care providers. It appeared that learning to live with LQTS is an ongoing process, requiring balance and interconnectedness between all aspects of wellbeing. These issues warrant further exploration. Recommendations to enhance genetic counselling within FN communities will be presented to reflect the Medicine Wheel concept.

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