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

Abstract

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 (41 %) received the diagnosis prenatally. A minority of the respondents received: support group information (14 %), Internet resources (21 %), success rates at other hospitals (16 %), or maximum ages of survivors (29 %). Among 26 % of the parents who reported seeking a second opinion from another PC, the majority (71 %) 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 22 %; p < 0.01). Parents' perception of the PC's compassion and empathy was inversely related to the likelihood of seeking a second opinion. Parents were more likely to seek a second opinion when they were not optimistic about their child's life expectancy, felt pressured by the PC to terminate the pregnancy, were told that their child's death was "somewhat" or "very" likely, or were told the child's CHD was "rare" (all p < 0.01). Two thirds (66 %) of the respondents were told that their child's condition was "rare." The majority of these (77 %) reported that the term was used by the PC. "Rare" was interpreted as "occurring in less than a million births" by 25 %, and as "few or no other people alive with this defect" by 27 %. Parental interpretation of "rare" was unrelated to their levels of education. As reported by the respondents, 13 % felt pressured to terminate the pregnancy by the PC. Those with hypoplastic left heart syndrome were more likely to report feeling pressure to terminate the pregnancy by the PC (21 vs 9 %; p < 0.001) or the perinatologist (23 vs 14 %; p = 0.026). The approach to counseling and the demeanor of the PC have important implications for parents' perceptions of their child's chance of survival. The information given at diagnosis, the manner in which it is presented, and the parents' understanding and interpretation of that information are critical factors in shaping parents' perceptions and management decisions.

Prenatal counselling for congenital anomalies: a systematic review

“…In the pilot study by Caldera et al ., all 14 parents responded positively regarding the usefulness of a CD‐ROM containing further information about CHD after prenatal counselling. This finding was supported by parents in other studies who perceived the use of diagrams or photographs of affected children as beneficial during prenatal counselling …”

“…The largest study included was an electronic survey of 841 parents of children with CHD. Suggested improvements included provision of more information about support groups and long‐term outcomes . An interesting finding of this study was the variability in parental understanding of the term ‘rare’ and the fact that use of this term led many parents to believe their child had little chance of survival.…”

“…Eight studies reported on the provision of information about relevant support groups or charity organisations; overall, this information was well received and utilised by parents . Parents in eight studies received written information, which was perceived as useful, although not as important as the face‐to‐face consultation I don't want to read a load of stuff that makes me more worried than I need to be…It feels much better to talk to the doctor or hospital staff who know our specific case …”

“…Some parents found online sources useful in providing further information about their baby's condition, whilst others reported difficulties locating reliable websites . Nevertheless, parents in three studies recommended counselling include the provision of online resources . In the study by Engels et al ., a physician‐developed website was perceived as adding value beyond face‐to‐face counselling.…”

Digital vs face‐to‐face information provision in patient counselling for prenatal screening: A noninferiority randomized controlled trial

“…In a digital age, patients increasingly need digital information provision and even digital counselling . Previous studies show that websites provide added value beyond face‐to‐face information and recommend online resources . Yet they also show that it is difficult and confusing to find information online .…”