Coping with Genetic Risk: Living with Huntington Disease (HD) |
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Authors: | Holly Etchegary |
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Institution: | (1) Clinical Research Scientist, Eastern Health and Clinical Epidemiology, Faculty of Medicine, Health Sciences Centre, Memorial University, Rm H1761, Level 1, St. John’s, NL, A1B 3V6, Canada |
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Abstract: | Rapid developments in genetics suggest that more and more people will be identified ‘at risk’ for common illnesses. Genetic
discoveries have the potential to improve disease outcomes, but they also highlight gaps in our knowledge about patient-level
factors such as how individuals respond to a genetic threat to their health and how they cope with that threat. There have
been few empirical applications of psychological theories to understand genetic testing decisions and outcomes, although there
have been calls for this approach. Drawing upon interviews with individuals at risk for (or with) Huntington disease (HD),
this study adopts a stress and coping framework to explore how people cope with genetic illness in the family. Qualitative
data analyses revealed that coping strategies were dynamic and varied but could be classified as 1) primary control coping,
2) secondary control coping and 3) social comparison strategies. Important distinctions were observed in coping strategies
among those who had undergone genetic testing and received a test result, those who remained at risk, and those affected with
HD, along with their caregivers. Implications for clinical practice and genetics health services are discussed. |
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Keywords: | |
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