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How Not to Tell Parents About Their Childa s New Diagnosis of Congenital Heart Disease An Internet Survey of 841 Parents

, : How Not to Tell Parents About Their Childa s New Diagnosis of Congenital Heart Disease An Internet Survey of 841 Parents.

An online survey for parents of children with congenital heart disease (CHD) was developed to study the perceptions and experiences of parents when receiving the diagnosis. The survey was distributed to online support groups. A total of 841 responses from parents of children with CHD in the United States were received over a 4-week period in 2010. The authors hypothesized that the counseling and demeanor of the pediatric cardiologist (PC) may be important factors in determining whether parents of children with CHD seek second opinions, and that the terminology used in counseling may be variably interpreted. Of the 841 respondents, 349 (41A %) received the diagnosis prenatally. A minority of the respondents received: support group information (14A %), Internet resources (21A %), success rates at other hospitals (16A %), or maximum ages of survivors (29A %). Among 26A % of the parents who reported seeking a second opinion from another PC, the majority (71A %) chose the second PC for long-term follow-up care. Those receiving a prenatal diagnosis were more likely to seek a second opinion than those receiving the diagnosis postnatally (32 vs 22A %; pA pA pA pA =A 0.026). The approach to counseling and the demeanor of the PC have important implications for parentsa perceptions of their childa s chance of survival. The information given at diagnosis, the manner in which it is presented, and the parentsa understanding and interpretation of that information are critical factors in shaping parentsa perceptions and management decisions.


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