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The emotional effects of genetic disease: implications for clinical genetics

McAllister, Marion, Davies, Linda, Payne, Katherine, Nicholls, Stuart, Donnai, Dian and McLeod, Rhona 2007. The emotional effects of genetic disease: implications for clinical genetics. American Journal of Medical Genetics Part A 143A (22) , pp. 2651-2661. 10.1002/ajmg.a.32013

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The aim of this qualitative study was to explore the emotional effects that may be common to many genetic conditions, or risk of genetic conditions, that could be appropriately targeted by clinical genetics services. The study sample comprised 52 individuals. Seven focus groups with patients of clinical genetics services, their representatives from patient support organizations and genetics healthcare providers were conducted. Focus groups were supplemented by 19 face-to-face interviews with patients and patient group representatives. Focus groups and interviews were audio taped, transcribed in full, and analyzed using the constant comparative method. Eight emotional effects of genetic diseases were identified: anxiety, worry about risks to children, guilt, anger, uncertainty, sadness and grief, depression, and redemptive adjustment. Two factors were identified that could modify the emotional effects; these were variability of genetic diseases, and lack of diagnosis/inappropriate care. Despite many negative effects of genetic disease being identified, results also suggest that redemptive adjustment is possible where a genetic condition is present in a family. Interventions designed to (1) adjust the modifying conditions and (2) help manage the emotional effects may facilitate adjustment and improve patient outcomes.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Subjects: R Medicine > R Medicine (General)
Uncontrolled Keywords: clinical genetics services; emotional effects; qualitative research; focus groups; interviews
Publisher: Wiley and Blackwell
ISSN: 1552-4825
Last Modified: 04 Jun 2017 04:47

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