There is a disparity in the research between the individual's and the family as a whole's interactional processes in the collection and dissemination of genetic information. There is a gap in our understanding of how couples deal with genetic information, especially when a child is diagnosed with an inherited genetic condition. Also, there is a lack of understanding of the decision-making processes regarding genetic testing. Furthermore, medical professionals and family therapists are becoming more aware of the effect these tests will have on family systems and on the health beliefs of the family. Once a diagnosis has been received, families now have the task of making sense of the diagnosis and deciding on how the family system needs to change or adapt in order to accommodate the genetic disorder. The purpose of this qualitative study was to understand the lived experiences of couples who have a child suffering from a genetic disorder (affected child) and to understand the couple's experiences of receiving the diagnosis of an inherited genetic disorder in a child, and how they as a couple, and by extension, their family, adapted to that diagnosis. Nine couples from the Midwestern United States were interviewed using a semi-structured, joint interview process. Using thematic analysis and the couples' own words, two studies emerged from the data. The focus of study 1 was on the decision-making processes about genetic testing and the decision to have future children of couples who have a child with an inherited genetic disorder. The focus of study 2 was on how the family adapted after receiving the diagnosis for their child. Implications and further considerations for family therapists are addressed.
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