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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Notes
Those with an intermediate test result may or may not go on to develop HD.
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Acknowledgements
I am grateful to participants for sharing their stories with me. I also thank representatives from the medical genetics clinic and the local branch of the HSC for their help with recruitment. This research was generously supported by a doctoral fellowship to the author from the Newfoundland and Labrador Centre for Applied Health Research and the Department of Psychology, Memorial University, both in St. John’s, NL, Canada.
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Etchegary, H. Coping with Genetic Risk: Living with Huntington Disease (HD). Curr Psychol 28, 284–301 (2009). https://doi.org/10.1007/s12144-009-9061-2
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DOI: https://doi.org/10.1007/s12144-009-9061-2