This paper reports the results of a longitudinal study of @entity1 at-risk to inherit the fragile X mutation. It addresses 1) how upsetting the @entity1 perceived their carrier information to be, 2) how serious a problem they perceive @entity2100 to be, and 3) descriptions of feelings about the carrier testing process. The study sample consisted of 42 @entity1 (20 carriers and 22 noncarriers). There were two measurement times (just prior to carrier testing and after learning actual carrier status). The measures used were a Fragile X Visual Analog Scale and a structured interview. At time 1, being at-risk was reported to be upsetting and @entity2100 was perceived to be a serious problem. For the @entity1 found to be carriers there was no change from time 1 to time 2 on any of the items. Significant change occurred in the non-carriers. They were significantly less upset at time 2 after receiving the results of their carrier test than at time 1. They also perceived @entity2100 to be a more serious problem than they did at time 1 and a more serious problem than the carriers at time 2. Themes found included concerns that carrier status for @entity2100 presented a barrier for having healthy biological @entity1 and concern for @entity1 's and grandchildren's adaptation to their own carrier status. Coping behaviors were activated to manage the emotions related to these concerns. The coping behaviors identified were minimization, acceptance of the possibility of being a carrier, a sense of being able to deal with the outcome of the carrier test, positive comparison, problem solving, and positive interpretation.

Longitudinal study of the carrier testing process for XXXX : perceptions and coping.

@entity1 :: ('9606', 'Species') :: ['women', 'children'] @entity2100 :: ('MESH:D005600', 'Disease') :: ['fragile X syndrome']
@entity2100 :: (MESH:D005600,Disease) :: ['fragile X syndrome']
