How Not to Tell Parents About Their Child’s New Diagnosis of Congenital Heart Disease: An Internet Survey of 841 Parents
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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.
KeywordsCongenital heart disease Counseling Hypoplastic left heart syndrome Internet survey Parent perceptions Psychosocial needs Support groups
The authors thank Susan Sabanos for help with the survey design; Karin Yospe, cofounder of California Heart Connection, for distribution of the survey; and the many online support groups that distributed the survey to their members and provide much-needed support to families.
- 3.Atz AM, Travison TG, Williams IA, Pearson GD, Laussen PC, Mahle WT, Cook AL, Kirsh JA, Sklansky M, Khaikin S, Goldberg C, Frommelt M, Krawczeski C, Puchalski MD, Jacobs JP, Baffa JM, Rychik J, Ohye RG, Pediatric Heart Network Investigators (2010) Prenatal diagnosis and risk factors for preoperative death in neonates with single right ventricle and systemic outflow obstruction: screening data from the Pediatric Heart Network Single Ventricle Reconstruction Trial. J Thorac Cardiovasc Surg 140:1245–1250PubMedCentralCrossRefPubMedGoogle Scholar
- 7.Feinstein JA, Benson DW, Dubin AM, Cohen MS, Maxey DM, Mahle WT, Pahl E, Villafañe J, Bhatt AB, Peng LF, Johnson BA, Marsden AL, Daniels CJ, Rudd NA, Caldarone CA, Mussatto KA, Morales DL, Ivy DD, Gaynor JW, Tweddell JS, Deal BJ, Furck AK, Rosenthal GL, Ohye RG, Ghanayem NS, Cheatham JP, Tworetzky W, Martin GR (2012) Hypoplastic left heart syndrome: current considerations and expectations. J Am Coll Cardiol 59(1 Suppl):S1–S42CrossRefPubMedGoogle Scholar
- 14.Levy DJ, Pretorius DH, Rothman A, Gonzales M, Rao C, Nunes ME, Bendelstein J, Mehalek K, Thomas A, Nehlsen C, Ehr J, Burchette RJ, Sklansky MS (2013) Improved prenatal detection of congenital heart disease in an integrated health care system. Pediatr Cardiol 34(3):670–679CrossRefPubMedGoogle Scholar
- 16.Marino BS, Tomlinson RS, Drotar D, Claybon ES, Aguirre A, Ittenbach R, Welkom JS, Helfaer MA, Wernovsky G, Shea JA (2009) Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 123:708–715CrossRefGoogle Scholar
- 25.Sklansky M, Miller D, Devore G, Kung G, Pretorius D, Wong P, Chang RK (2005) Prenatal screening for congenital heart disease using real-time three-dimensional echocardiography and a novel “sweep volume” acquisition technique. Ultrasound Obstet Gynecol 25:435–443. doi: 10.1002/uog.1858 CrossRefPubMedGoogle Scholar