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Information received at congenital heart disease diagnosis shapes parental perceptions
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Upon a diagnosis of congenital heart disease, the information provided, the manner in which information is presented, and the parents’ understanding and interpretation are critical factors that shape parental perceptions and management decisions, researchers reported in a new study.
An anonymous, 82-question online survey was developed to evaluate parent experiences upon receiving their child’s diagnosis of congenital heart disease. The survey yielded 841 evaluable responses from parents in the United States within a 4-week period during 2010. Ninety-five percent of the responders were mothers, and 65% were aged 26 to 35 years at the time of their child’s diagnosis. Forty-one percent of the diagnoses were prenatal and 25% were for hypoplastic left heart syndrome.
Findings revealed that most responders reported receiving treatment options (75%) and written information about the congenital heart disease diagnosis (63%) from their first pediatric cardiologist. Few responders indicated that they received information on support groups (14%), Internet-based resources (21%), the maximum age of CHD survivors (29%) or success rates at other hospitals (16%).
Twenty-six percent of responders sought a second opinion from another pediatric cardiologist. Common reasons provided for seeking a second opinion included finding a doctor with more experience with the specific diagnosis (49%), determining the availability of other treatment options (46%) and finding a more compassionate or empathetic doctor (36%). Of those parents seeking another opinion, 72% subsequently received long-term follow-up care from the second physician, according to the study.
The researchers reported an inverse association between the responders’ perception of the empathy and compassion of their cardiologist and the odds of seeking a second opinion. Other factors associated with responders’ seeking a second opinion included a non-optimistic viewpoint of their child’s life expectancy, a sense of pressure from the cardiologist to terminate their pregnancy, having been told that the child’s death was either “somewhat” or “very” likely, and having been told that their child’s condition was “rare,” which occurred in 66% of cases (P<.01 for all). When told that their child’s diagnosis was rare, responders interpreted this as “occurring in less than a million births” in 25% of cases and “few or no other people [are] alive with this defect” in 27% of cases.
When asked the question, “What else would have been helpful at diagnosis,” nearly half of responders said they would have benefited from more information at the time of diagnosis, and 30% expressed a desire for information on support groups or patients with the same condition who had survived.
“Parents faced with their child’s congenital heart disease diagnosis often have little time to make decisions,” the researchers wrote. “It is critical, therefore, that parents receive and understand information upon which to make informed choices regarding treatment options, where to have treatment and whether or not to continue a pregnancy in the case of a prenatal diagnosis. … Effective methods of providing information to parents that promote optimal understanding and retention while avoiding misinterpretations need to be investigated further.”
Disclosure: The researchers did not provide relevant financial disclosure information.
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